Day One:

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Welcome & Introductions

Hospice Volunteer Training

• If we are issued a birth certificate, we are guaranteed to one day be issued a death certificate

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HOSPICE:

1. Definition
2. Philosoph
3. History
4. Principles of Hospice

DEFINITION OF HOSPICE

• Hospice is a coordinated program of palliative (comfort rather than aggressive) care and support services designed to meet the unique needs of patients and families facing a limited life expectancy.
• Services are provided through a medically directed interdisciplinary team of professionals--physicians, nurses, social workers, spiritual counselors, aides, therapists and volunteers.
• Bereavement services are available to families for 13 months following the patient's death. (REQ)

PHILOSOPHY OF HOSPICE ���

Hospice is a special kind of care designed to provide sensitivity and support for people in the final phase of a terminal illness and is based on a philosophy which embraces six significant concepts:

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• Death is a natural part of life. When death is inevitable, hospice will neither seek to hasten nor to postpone it.
• Hospice care establishes pain and symptom control as an appropriate clinical goal.
• Hospice recognizes death as both a spiritual and a physical experience. Psychological and spiritual pain is as significant as physical pain and deserves the same attention.
• Patients, their families, and loved ones are the unit of care. We have learned that to effectively care for patients we cannot separate patients from their environment. That environment includes their homes, their families and their friends.
• Bereavement care is critical to supporting surviving family members and friends.
• Hospice care is made available by most hospices regardless of the patient's ability to pay.

STANDARDS OF A HOSPICE PROGRAM OF CARE  PRINCIPLES

• 1. Access to Care—Hospice offers palliative care, to all terminally ill people and their families regardless of age, gender, nationality, race, creed, sexual orientation, disability, diagnosis, availability of a primary caregiver, or ability to pay.  
• 2. Patient/Family as the Unit of Care—The unit of care in hospice is the patient/family. 
• 3. Hospice Interdisciplinary Team—A highly qualified, specially trained team of hospice professionals and volunteers work together to meet the physiological, psychological, social, spiritual and economic needs of patient/families facing terminal illness and bereavement. 
• 4. Scope of Hospice Services—Hospice offers a safe, coordinated program of palliative and supportive care, in a variety of appropriate settings, from the time of admission through bereavement, with the focus on keeping terminally ill patients in their own homes as long as possible.  
• 5. Coordination and Continuity of Care—Hospice care is available 24 hours a day, seven days a week. Services continue without interruption if the patient care setting changes.  

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STANDARDS OF A HOSPICE PROGRAM OF CARE  PRINCIPLES

• 6. Utilization Review—Hospice is accountable for the appropriate allocation and utilization of its resources in order to provide optimal care consistent with patient/family needs.  
• 7. Hospice Services Record—Hospice maintains a comprehensive and accurate record of services provided in all care settings for each patient/family. 
• 8. Governing Body—Hospice has an organized governing body that has complete and ultimate responsibility for the organization.
• 9. Management and Administration—The hospice governing body entrusts the hospice administrator with overall management responsibility for operating the hospice including planning, organizing staffing, and evaluating the organization and its services.
• 10. Quality Assessment and Improvement—Hospice is committed to continuous assessment and improvement of the quality and efficiency of its services.

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THE HISTORY OF HOSPICE

Early Beginnings

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Hospice originally dates back to medieval times. A hospice was a place where weary travelers could find shelter and temporary respite from their journeys. Religious groups operated these shelters for travelers on religious pilgrimages. As time passed, they begin to care for the sick, hungry and weary. The word hospice comes from the Latin words “hospes” meaning host and “hospitium” meaning hospitality.

The modern hospice can be traced to the Irish Sisters of Charity who established St. Joseph’s Hospice at London in 1905. However, the modern concept of hospice care, as we know it, was also pioneered and defined, in large part, by Dame Cicely Saunders, a British physician who opened St. Christopher’s Hospice in London in 1967. It was through her work that the philosophy of emphasizing pain and management control rather than curative care was established.

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Hospice in the United States

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In the United States, the momentum towards hospice care started later than it did in England and was enhanced by the work of Elisabeth Kubler-Ross who wrote on Death and Dying in 1969. Through the efforts of many professional and lay persons, the hospice movement continued to advance and the first United States hospice program began in New Haven, Connecticut, in 1974.

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Hospice continued to flourish in the United States and across the country. These programs were primarily volunteer or non-profit and the vast majority were home care programs. In 1982, Congress passed the Medicare Hospice Benefit, which expanded hospice care availability for the Medicare eligible population.

LIFE EXPECTANCY CHANGES OVER TIME:

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Open Discussion

THE HOSPICE MEDICARE BENEFIT

THE HOSPICE MEDICARE BENEFIT

The Hospice Medicare Benefit is a federally funded program designed specifically to allow terminally ill patients to die at home. It allows patients as much control over their life and choices as possible while at the same time working to alleviate pain through symptom-control regimes.

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“Home” is defined as wherever the patient resides. While the majority of hospice patients remain in their homes, other type residences caring for hospice patients include:

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• Inpatient Units
• Skilled Nursing Facilities
• Residential Care Facilities for the Elderly (RCFE’s)
• Congregate Living Health Facilities (CLHF’s)

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The Hospice Medicare Benefit is a special, separate benefit under the Medicare program designed to be the single source of all healthcare related to a patient’s terminal illness.

HOSPICE SERVICES PROVIDED

UNDER MEDICARE

CORE SERVICES (must be provided directly)

• Physician Services
• Nursing Services
• Social Services
• Resource referrals
• Counseling:
• Spiritual Counselor/Chaplain
• Nutrition Counseling
• Bereavement

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• Certified Home Health Aide
• Homemaker
• Volunteers
• Medications
•  Medical Supplies
•  Durable Medical Equipment

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OTHER SERVICES PROVIDED

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WHICH PATIENTS ARE ELIGIBLE FOR HOSPICE CARE?

Hospice will accept patients on the basis that the patient’s medical, nursing, and psychosocial needs can be reasonably met by the hospice in the patient’s place of residence.

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The following criteria must be met to be eligible for hospice care:

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• The patient must have a limited life expectancy (six months or less if the disease follows its natural course) as certified by the attending physician and the hospice physician.
• The patient and/or family have made a decision to seek only palliative care and have discontinued any curative measures.
• The patient and/or family agree to participate in the planning, implementing and evaluating the plan of care.
• The patient must be eligible for Part A Medicare in order to be placed on the Hospice Medicare Benefit. A Medicaid eligible patient may be placed on the Hospice Medicaid Benefit. For patients with private insurance, hospice will explore the availability of hospice coverage with the insurance carrier or arrange to provide charity care.

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CAUSES FOR TERMINATION OF SERVICES

The hospice will terminate hospice services to patients in the following instances:

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• The patient/family elects to pursue non-palliative treatment or otherwise chooses to revoke their hospice benefit election.
• The patient requiring inpatient care refuses to utilize a participating hospital/facility with which this hospice has a valid contract.
• When the Interdisciplinary team determines there is no longer any reasonable expectation that it can meet the patient/family needs.
• Patient refuses further care or agency intervention.
• The home (residence) is physically unsafe for client and/or hospice staff.
• The patient moves out of the service area of the hospice.
• Patient no longer has a terminal prognosis.
• Hospice program discontinues its operation.

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Confidentiality and Patients Rights

Confidentiality

How many times have you waited at a check-out stand or in a bank line? Do you remember traveling alone as a passenger on an airplane or bus? It is likely that if you have done any of these things you have encountered that individual who will spill out all his worries and woes to you at the drop of a hat. You probably noticed how relieved he looked after “getting it off his chest.”

To open up to another person may involve a risk. To expose a sensitive part of your emotional self to someone can be a scary experience.

Hospice offers the special opportunity to the patient/family to share feelings or thoughts that may never have been shared with anyone before. The patient/family may gain a sense of security. The self-disclosure and openness resulting from a conversation may be a big step toward working through a problem.

By sharing personal information with you the patient/family indicates a willingness to trust you. To maintain their trust in you as a listener and in hospice as a service, every patient/family’s right to confidentiality must be respected.

If you have ever confided in someone you trusted only to have your secret spread around, detail by painful detail, you have felt the hurt, angry feelings that go along with broken confidence.

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What could happen if you relate to a non-hospice person the details of a specific situation? At least two negative consequences could occur to reduce our effectiveness as a service. Our credibility would decrease as word spread that we don’t keep personal information confidential. Second, a patient/family whose confidence is broken is less likely to encourage others to use our service.

Information Regulated by Privacy Rule

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HIPAA is an Acronym that stands for the Health Insurance Portability and Accountability Act.

The HIPAA privacy rule requires covered entities to protect the privacy of “protected health information” (PHI). PHI is defined as information held or disclosed by the covered entity in any form (electronic, paper records, oral communications) that: (1) identifies an individual and (2) relates to: (a) the individual’s past, present, or future physical or mental health or condition; (b) the provision of health care to the individual; or (c) the past, present, or future payment for the provision of health care to the individual.

The concept of confidentiality is vital to hospice effectiveness as a service. Confidentiality is also important for legal reasons. In order to maintain confidentiality, it is imperative that all volunteers observe the following policies:

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• Under no circumstances should conversations be discussed outside of the hospice office or training sessions. If you encounter a hospice staff coming or leaving a patient’s home and you MUST share information, do so in a location where no other individuals are within earshot.

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• All patient information (face sheets, referral/intake data, volunteer request information) containing information about the patient/ family are to be held in extreme confidence (i.e., do not leave them visible in your vehicle).

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Unfortunately, it is very easy to violate a patient’s confidentiality even when one does not intend to do so. Common areas that this tends to occur at are the following:

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• Restaurants
• Public areas of a hospital/nursing home
• Elevators
• Rest Rooms
• Malls
• General discussions with family or friends
• Leaving papers lying in your car in which a

passerby could see patient name & information,

or having papers out in view in your home,

restaurant, etc.

Keep in mind, however, that your input is important to the hospice team. Conversations with other staff members or with your advisor are permissible and highly encouraged. Consultation is an excellent way to receive feedback about how to handle a situation. This is not a breach of confidentiality because patient/family information is staying within the service. Its practice is sometimes important to keep the staff aware of situations that may develop with specific patient/family situations.

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Discussion And Questions?

Patient Rights

For hospice patients, a special bill of rights has been developed that speaks to the human elements of the terminally ill person and their needs. It is as follows:

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• I have the right to be treated as a living human being until I die.
• I have the right to maintain a sense of hopefulness, however changing its focus may be.
• I have the right to be cared for by those who can maintain a sense of hopefulness, however

changing this might me.

• I have the right to express my feelings and emotions about my approaching death in my own way.
• I have the right to participate in decisions concerning my care.
• I have the right to expect continuing medical and nursing attention even though “cure” goals

must be changed to “comfort” goals.

• I have the right not to die alone.
• I have the right to be free from pain.
• I have the right to have my questions answered honestly.
• I have the right not to be deceived.
• I have the right to have help from and for my family in accepting my death.
• I have the right to die in peace and dignity.
• I have the right to retain my individuality and not be judged for my decisions, which may be contrary to beliefs of others.
• I have the right to discuss and enlarge my religious and/or spiritual experiences, whatever these may mean to others.
• I have the right to expect that the sanctity of the human body will be respected after death.
• I have the right to be cared for by caring, sensitive knowledgeable people who will attempt to

understand my needs and will be able to gain some satisfaction in helping me face my death.

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Role of the Volunteer

The Volunteer

• Medicare requires that 5% of all hospice patient hours come from volunteers.

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• The hospice volunteer plays a pivotal role in the provision of services to patient and families. As the only non-paid team member in the program, they bring to the terminally ill and loved ones a special kind of caring that comes from a desire to help and aid in comfort.

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• Often, we find that patients and families talk to the volunteer about matters they can’t or don’t share with any other team member. It can be a wonderful bond that brings satisfaction to both parties. There are many types of volunteers that provide service:

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Opportunities for Life Changing Experiences

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Volunteers come from all walks of life, backgrounds, experience, education and they bring wonderful and valuable gifts.

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However, the role of volunteer also comes with a responsibility to our patients and families, the hospice staff, and to their own personal credo.

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The following is some of the important points to consider when taking on the mantle of “hospice volunteer.”

A CODE OF RESPONSIBILITY FOR ALL VOLUNTEERS

• BE SURE...Look into your heart and know that you really want to help other people.
• BE CONVINCED...Don’t offer your services unless you believe in the value of what you are doing.
• ACCEPT THE RULES...Don’t criticize what you don’t understand. There may be a good reason.
• SPEAK UP...Ask about things you don’t understand. Don’t carry your doubts and frustrations until they drive you away or turn you into a problem worker.
• BE WILLING TO LEARN...Training is essential to any job well done.
• KEEP ON LEARNING...Know all you can about your job.
• WELCOME SUPERVISION... You will do a better job and enjoy it more if you are doing what is expected of you.
• BE DEPENDABLE... Your word is your bond. Do what you agreed to do. Don’t make promises you can’t keep.

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Break Time

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VOLUNTEER DUTIES AND RESPONSIBILITIES

VOLUNTEER DUTIES AND RESPONSIBILITIES

The following is a compilation of standards volunteers are expected to follow. Most of these have been discussed previously and this serves as a review for the volunteer.

• 1. Volunteers will conduct themselves according to the philosophy and principles of hospice.
• 2. Volunteers will keep commitments with their patient/families and hospice staff. If the volunteer absolutely cannot keep a commitment, they will notify the patient/family and the hospice office as far in advance as possible.
• 3. Volunteers will respect the lifestyle, cultural and religious orientation of patient/families with whom they work, avoiding the temptation to impose the volunteer’s standards upon them. The volunteer is in the patient’s home to help meet the patient’s needs within the context of his life situation. It is inappropriate to attempt to change the patient/family lifestyle in any way. The patient/family wishes and needs are of primary concern and take precedence over the wishes and needs of the volunteer.
• 4. Volunteers will carefully guard any and all confidential material pertaining to the patient/family or any hospice matter.
• 5. Volunteers will attempt to give care and service according to the level of their training and ability, avoiding the assumption of expertise inappropriate to their skill and training.

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Volunteer Duties and Responsibilities continued

• 6. The spiritual resources of the patient/family, volunteer and hospice staff are very important considerations in the plan of care, but the volunteer will guard against any overt or subtle effort to convert the patient/family to a particular religious orientation. When the patient/ family reveal spiritual needs, the hospice staff should be informed so that appropriate response may be made.

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•  7. The volunteer will in no way deviate from the plan of care developed by the hospice team in consultation with the patient’s/family’s physician or other agency involved in the development of the plan of care. Should there be a change in the volunteer’s role thereby affecting the plan of care, the Volunteer Coordinator or RN case manager will be notified immediately.

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•  8. Volunteers will refrain from discussions with the patient/ family concerning any difference of opinion and approach which may develop within the hospice team or between the hospice team and the patient’s/family’s physician or other agency involved in the plan of care.

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• 9. The volunteer will not offer suggestions or advice regarding legal, financial or medical issues the patient and family may be have. If such questions or concerns are revealed to the volunteer, the volunteer will report such needs immediately to the hospice office so that an appropriate response can be made.

PATIENT CARE VOLUNTEER STEPS

• When an assignment is offered, the volunteer will receive pertinent patient information from the Volunteer Coordinator. After discussion of the patient/family background and needs, the volunteer may choose whether or not to accept the assignment. If you have difficulty reaching a client, let the office know immediately so that we can verify phone number and address.

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• The volunteer Coordinator will arrange the first visit and attend the initial meeting with the volunteer. They will help the volunteer and the patient develop a schedule. When leaving, the volunteers should be sure the patient/family know when the next visit will be.

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• Should there be a conflict in the volunteer assignment (i.e., a lack of compatibility with the patient or a determination that the volunteer may not be needed), the volunteer should call Volunteer Coordinator to discuss the situation.

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• The volunteer should communicate immediately any acute changes in the patient’s condition. If the patient is at a nursing home facility, the volunteer should locate the nurse on duty and the hospice office. If the patient is in their home, the volunteer should call the hospice office. The volunteer should NOT initiate contact with the patient’s doctor directly.

PATIENT CARE VOLUNTEER STEPS

• When providing relief for the primary caregiver so that they may leave the home, the volunteer should request a phone number where they can reached if necessary.
• Volunteer responsibility is extremely important. If the volunteer is unable to complete an assignment, they should call the Volunteer Coordinator as soon as possible, so another volunteer can be assigned.
• If there is an incident or accident in the home or nursing home facility involving a patient or family member, the volunteer should notify the person in authority immediately. Additionally, the volunteer should call the hospice office to report the event.
• The volunteer should send documentation into the office each week. The Monthly Activity and Hours Reports that are derived from this information are essential for quality patient care and are needed to meet required Medicare guidelines for hospice patients (5% of all patient care hours should come from volunteers).
• The volunteer should notify the Volunteer Coordinator regarding any changes of their name, address, phone number or volunteer status. If it becomes apparent that a volunteer cannot continue their contribution, they should discuss this change in status immediately with the Volunteer Coordinator.

Before the visit

GROOMING ATTIRE FOR VOLUNTEERS

It is expected that volunteers know what is considered acceptable dress and grooming for their assignment. Volunteers must avoid extremes in clothing and grooming that are not suitable. Each volunteer is expected to exercise personal discretion regarding appropriate dress in the interest of good grooming, personal safety and public appearance.

The following guidelines are considered reasonable:

• A. Grooming Extremes in hairstyles must be avoided. Hair must be clean and neatly combed. Beards, mustaches and sideburns must be neatly trimmed.
• B. Perfume and aftershave should NOT be used. The smell can be very unpleasant to people on medication. Long dangling, earrings and other excessive jewelry should be avoided.
• C. Clothing—Clothes and shoes must be clean and present an appropriate appearance at all times. Extremely short or very long skirts are not considered in good taste. Clothes, dress or casual, should be in colors and style generally considered as appropriate (i.e., work dungarees, coveralls or similar garments are not considered appropriate for volunteers visiting patient). Your personal grooming and manner of dress can affect a patient’s mood. Color and attractiveness can help lift the spirit.

  D. Badges Volunteers must always wear name badges when visiting patients.

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Before the visit

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 PREPARATION

• The first visit is always the hardest. It is not unusual to feel some anxiety about it. Questions arise such as, “Will they like me?” “What will I do?” These questions are natural—just remember that you have been specially selected and trained to be part of the hospice team. We have instilled the knowledge you need to be an excellent hospice volunteer and have every confidence in you.
• It may help you if you give some time and thought to what you will do when you get there. Your plans will depend upon the mental and physical status of the patient and the interests, hobbies or activities you know they might be interested in. Review the information you already have about the patient and family. At the same time, do not go with a planned agenda that may not be feasible. Keep your mind open to any number of possibilities.
• Don’t try to rush the relationship. The patient and family will let you know what they need and you can let them know what you have to offer. Let the relationship gradually flourish and it will grow with time and patience.
• Remember that there is no such thing as a “perfect visit.” We can always recall words that we wish we might have said differently, or in hindsight are able to see that the timing could have been better. Even with our imperfections, if we are genuine and sincere, that is what will prevail and is what the patient will remember.

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During the Visit

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• Be a good listener. Be attentive to “leads” about the patient’s interest areas.

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• Be yourself. It is your genuineness and ability to care that will come across to the patient and family. People who are ill appreciate being treated naturally. Relate to the patient, not to the illness.

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• Realize that there is nothing wrong in silence and silence builds trust. Your greatest service is just to be there. You can be a loving beneficial presence.

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• Don’t feel that you must know all the answers or have a solution to every problem. It’s all right to say, “I don’t know” or “I will try to find out the answer”.

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• Volunteers should not discuss their own personal problems; financial difficulties or other non-relevant disturbing issues.

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During the Visit

RULES

• Volunteers must recognize that they visit a pa­tient as a guest. In the home, you are entering an area that reflects a lifetime of habits in their daily activities and choices--they need to be accepted as they are. In the nursing home facility or RCFE, the visiting rules and protocol are to be observed. 
• Confidentiality is a must. We hope you will be enthusiastic about your work with patients and their families. You may certainly share your insights with friends and family. Howev­er, the personal life and medical conditions you observe or are privileged to hear must be kept in strictest confidence.
• Always knock on a patient’s door, even it the door is open. 
• Place yourself in most direct line of sight of the patient and at their level if possible. It is often annoying to the patient if he can’t see you clearly or must turn their head to do so.
• Speak clearly and loudly enough to be comfortably heard and without strain.
• Never sit on a patient’s bed. Health/contamination/comfort reasons should be enough to prohibit sitting on the bed. It is also unwise because bed movement may be painful to the patient and such closeness may be an invasion of his privacy/life space.

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During the Visit

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RULES

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• Touch the patient if appropriate. Shaking hands or holding the patient’s hand tells him you want to be “in touch” with him and that he is not “untouchable” or unacceptable. 
• Volunteers may not give either prescription medication or nonprescription medication unless pre-poured and instructed. 
• Volunteers are prohibited from giving direct patient care except for defined support measures.
• A volunteer will not visit a patient while under the influence of alcohol or drugs.
• Volunteers are never to smoke in the patient’s environment. The only exception can be if the patient smokes and invites you to do so.
• Volunteers with a cold, flu or other communicable diseases should not make a visit to a patient. 
• The volunteer may give a patient a manicure, but CANNOT cut fingernails or toenails of patients without permission from the nurse, and inclusion in the plan of care. (Absolutely cannot cut Diabetic nails). If in question and the Volunteer wished to trim the nails, they must call the nurse, get permission, notify the volunteer Coordinator and document the conversation and plan.

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VISITING THE NURSING HOME FACILITY

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• Always check into the nurse’s station when visiting a nursing home facility. Inform them who you are with and the patient you will be visiting. Ask if there is anything you need to know before seeing the patient. Also let them know when you are leaving the facility and advise them of anything that might be important regarding the patient’s care. 
• When people visit you, they come to the door and knock or ring the bell. A resident room in a nursing home is home. Knock before entering and ask permission to enter. If the resident is unable to respond, then announce yourself before walking in. This is a legal requirement.
• Most nursing homes have specified visiting hours. Usually you can visit anytime during a ten or twelve-hour period and a few homes have no limits on visiting. Use your judgment and try not to visit at times the patient prefers to rest or is receiving treatments. If you cannot visit during the regular hours, work out an alternative schedule with the patient, family and director of nurses or administrator.
• Be realistic about planning your visits. Do not make promises you cannot keep as this is cruel to the patient and they will feel abandoned by your lack of presence. If you cannot keep an appointment, call in advance and immediately suggest another time that you will be able to visit.

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VISITING THE NURSING HOME FACILITY

• Volunteers often have certain feelings or emotions centered on a nursing home facility itself and what it represents to them. They may have never been in a facility before and feel repulsed by what they experience when visiting. Try to look beyond the physical appearances. Keep in mind that each resident has a unique personality and has had a lifetime of experience before they became disabled.

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• A negative response may occur when the volunteer has experienced having a loved one in a nursing home facility and this has left them with sad or angry feelings.This is where your role as a volunteer professional must take precedence. This situation is a new one and different from what occurred before. Do not dwell on the past but look at it, instead, as a learning experience that allows you to bring your knowledge of nursing home life to your work with the patient and family.

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• Another difficulty encountered is the fact that nursing homes often remind us of our own mortality, particularly if we are at midlife or beyond. The surest way to overcome this obstacle is to become familiar with the nursing home and the needs of the residents it serves.

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CULTURAL AND RELIGIOUS DIVERSITY� �

Diversity

• In the United States, we are a population that is made up of many different nationalities, ethnic groups, and religions. This diversity has created a wonderful strength and richness to our national heritage. The complexities of multiculturalism has also presented us with challenges and never more so than in the hospice. Most cultures have very specific views regarding dying, death, funeral, burial and have developed religious or spiritual practices around them. The word “hospice’ does not even exist in some languages and interpretation can be difficult.

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• It is our responsibility to learn more about other cultures to better understand their values and belief systems. In this way, hospice can be presented to them as a healthcare alternative in terms they can understand and appreciate. It will also allow us to provide hospice services with respect, honor and dignity according to their traditions.

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To be culturally competent, you should:

• Be aware of your own cultural and family values.

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• Be aware of your personal biases and assumptions about people with different values than yours.

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• Be aware and accept cultural differences between yourself and individual patients.

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• Understand the dynamics of the difference.

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• Adapt to and respect diversity.

SPIRITUALITY�

Spirituality

• Just as the physical and emotional needs of patients and families are an integral part of hospice care, we also look to alleviate the spiritual pain that may exist. Spiritual suffering is not always readily seen or acknowledged by hospice staff, however, helping the patient and family deal with these issues transcends our roles beyond being a helper. We seek to discover and nurture the inner being as they struggle with the larger meaning of life.

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• �Many people confuse spirituality with religiosity. Although they are similar, they are not the same. One can be very religious, observing the rituals of their organization. A person can be very spiritual but not be a member of an organized religion.

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• Spirituality can be defined as the essence of being a human being, the life force that includes the emotional, ethical, social, and intellectual and physical dimensions and is the source of all faith, hope and courage.

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• There is also confusion as to the difference between emotional and spiritual concerns. The emotional realm deals with a person’s relations to self, other people and the immediate environment. The spiritual looks at a person’s relations to things larger than oneself—principles, values, and higher forces.

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• When a person is faced with a traumatic event as occurs when dealing with a terminal illness, they may experience a spiritual crisis and begin to question their most basic beliefs. This examination includes looking at various issues that are or have occurred in their life such as:

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• Why is this happening to me?
• What is the purpose of my life?
• What happens after we die?
• What do I value and believe in?

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Spirituality

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• The most common spiritual needs of terminally ill patients are meaning and transcendence, forgiveness, hope, love and relationship, dignity, and belief in a higher power. The difficulty in dealing with spiritual pain is that it is often not verbalized or openly communicated by the patient. This suffering may be brought on by a loss of faith, abandonment, failure, despair, betrayal and injustice. It can pervade every other aspect of one’s being including the emotional, physical and social. Some of the indicators we look for include the following:

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• Expression of feelings of meaningless, despair, hopelessness
• Presence of prolonged or intense suffering
• Inability to trust
• Anger towards God, religion, clergy, others
• Sense of guilt or shame
• Concerns with moral or ethical aspects of care
• Unresolved feelings about death
• Alienation or isolation from others and God
• Difficulty in finding meaning in midst of suffering.
• Values and beliefs opposed by family, friends or health care professionals
• Lack of identity, feeling disrespected

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Spirituality

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VOLUNTEER GUIDELINES

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The volunteer’s role in enhancing the spiritual dimension is not completed in a vacuum. Communication with other team members particularly the hospice spiritual counselor, if they are involved, is vital.The hospice volunteer also needs to be very aware of their own personal religious beliefs and make sure they do not become overzealous helping a patient or family reconcile their spiritual or religious issues. The following might be helpful to you:

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• Listen rather than give advice.
• Avoid answering tough questions. Or answer questions “tentatively” so as to allow the patient to explore their own feelings and needs.
• Be non-judgmental and tolerant of differing values and attitudes.
• Respect and seek to understand the patient and family’s cultural and ethnic aspects of their religious customs and beliefs.
• Be aware of your limitations in assisting persons with spiritual needs.
• Provide support but do not fix or solve spiritual issues.
• Grow in your own spirituality by listening and learning from the patient

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Comments & Questions

Communication

Communication

• Listening to, recognizing, and responding to patient emotions are essential skills for people who care for dying patients. We often think of this skill as innate—either we have the skill or we don’t. In fact the skill of responding empathetically to patient emotions can be learned.

Communication

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• DEFINITION #1 -- Communication is a process that involves two or more people. It is an interaction that operates on two levels—verbal and non-verbal. It uses language, symbols and unspoken clues to transmit its messages.
• DEFINITION #2 --

(A) Communication is both a process and an experience.

  (B) As a process, it takes place through:

words

gestures

facial expressions

symbols

(C) It operates on two levels:

verbal

non-verbal

  (D) As an experience, it is the essence of everything we do.

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Communication

So why do people communicate? There are many reasons bring benefit to both parties. Some considerations for communicating are as follows:

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• To influence or persuade others
• To comfort them
• To negotiate within a system or bureaucracy

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BARRIERS TO GOOD COMMUNICATION

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FAILURE TO LISTEN -- The number one rule for good communication is listen, listen, and listen.

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Too often we are thinking about what we want to say, what we should say, or how we are going to say it that we miss the real essence of what the other person is trying to tell us. There are five levels of listening:

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Communication

5 Levels of Listening:

• Hearing: requires little energy, if any, or involvement on the part. Simple statements like “goodbye” or “I’ll get the phone” and other common phrases have simple meanings and one does not have to struggle to understand it.

• Understanding: If you try to understand what you are hearing, it takes a little more energy.

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• Retaining: This takes more concentrated effort and calls for the person to be more focused.

• Analyzing and evaluating: This can take a great amount of energy, more so if the topic is complicated or unfamiliar to you.

• Active or Empathetic Listening: This is the most difficult level in the art of listening and requires the most amount of energy and effort.

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Communication

Communication

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• VALUE JUDGEMENTS — All of us have many norms, values and beliefs that we have been taught from our infancy and onto our adult world. Others may not share the same concepts that you do and in your role of volunteer; it is important that you not judge them.There is room for many ideas and methods of doing things—sometimes we can even learn from each other.

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• LACK OF EMPATHY OR ACCEPTANCE — The inability to feel for the other person and/or be able to accept who they are will prevent you from being open and caring. Other people can sense this and will not be able to share of themselves.

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Communication

• CULTURAL DIFFERENCES -- We live in a multi-ethnic world that has brought many cultures together into one place. This diversity has many wonderful benefits and we can learn from others in the process of sharing our individual cultures. Ignorance about another person’s customs or traditions can sometimes cause hurt feelings or worse. It is important to learn all you can about people from other countries or ethnic regions especially populations you will be working with.

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• LANGUAGE DIFFERENCES -- As with cultural differences, language difficulties can be most problematic. Using a specialized vocabulary (i.e. medical), regional dialects, not completely understanding what the person has said, using words that have a different meaning in another country, or using another person to translate/interpret for the patient or family can all contribute to poor communication.

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Communication

• PHYSICAL/MENTAL HANDICAPS -- Communicating with people with disabilities can create special concerns. They may have speech impediments, hearing difficulties, or cognitive impairments, to name a few. Particular care may need to be taken to understand them and to talk to them so they understand. Do not shout at a blind or deaf person and avoid your mouth or murmuring when speaking.

• POOR COMMUNICATION SKILLS – In some cases, it is really a matter of someone having poor communication skills. They are unable to verbalize very well to others, have a limited vocabulary, or for some other reason, they cannot clearly let you know about their needs.

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• MISCELLANEOUS FACTORS -- Other factors to consider can be impediments such as insufficient physical space, lack of privacy or not having/taking enough time to really sit and listen. Some of these problems can be solved by simply moving the patient to another room or making sure you leave ample time for your visit.

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DEVELOPING EFFECTIVE COMMUNICATION

• Actively listen
• Be courteous
• Show attentive behavior
• Make good eye contact
• Have an open and positive attitude
• Keep your sense of humor
• Have an open, relaxed manner

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Communication

ADDITIONAL FACTORS TO CONSIDER:

• Physical appearance
• Body language
• Tone of voice
• Eye contact:
• Sense of humor

Communication

WHAT NOT TO DO - THE THREE DON’TS

• 1. Don’t try to talk a person out of their feelings with reassurance. Active listening entails accepting those feelings whether or not they appear justified.

• 2. Don’t try to figure out the problem for the person; he can do that especially if his feelings are accepted. If a person feels not understood, he will be even more frustrated and angry and less able to reach his own solution.

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• 3. Don’t try to give answers. This prevents the person from problem solving for himself. Active listening helps the person define problems for himself; figure out what he is feeling and then let the feeling go. It enables the persons to begin thinking and problem solving for himself.

Communication

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Day Two:

Welcome

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HOW TO MAINTAIN BOUNDARIES�

What are boundaries? 

• Boundaries are understood, sometimes unspoken, physical and emotional limits of the relationship

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• Boundaries are a framework that give patients and hospice team members a range of acceptable behavior.

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• Boundaries are an excellent way to care for yourself as a hospice volunteer.

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Boundaries

Friendly Volunteering vs. Friend   

• A hospice volunteer relationship is an important part of the therapeutic process

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• As patients and families face end of life issues signs of intimacy may appear. Patients and family members often want to talk about really personal issues. An untrained ear might interpret this as an invitation to friendship.

Boundaries

Why is this an issue? 

• Hospice volunteers are caring people and want to do what’s best. In hospice work, boundaries can easily become blurred due to the nature of what we do and the setting. The population we serve is vulnerable and may not be aware of interpersonal boundaries.

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• Crossing Boundaries�Blurring of boundaries can occur innocently one small step at a time. It is important to assess yourself on a regular basis to make sure you are providing appropriate professional services. If you are unsure how to behave or about the ethics of a situation, it is always best to ask advice from a team member. Always make sure your actions are in the best interest of the patient.

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Boundaries

How to know if you are crossing the boundary line 

• Are you making special exceptions to the plan of care?

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• Do you feel a sense of entitlement or that this is “your” patient?

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• Would you be embarrassed if your actions were published on the front page of the newspaper or if someone told your friends and family or the hospice team about them?

Boundaries

Boundaries

Financial

Financial issues are always a very sensitive matter. There are psychological issues that often are centered on this area and one must be aware of the impact it can have when it is not handled in a careful manner. The basic rules are these—NEVER, NEVER:

• Lend money
• Borrow money
• Accept gifts or gratuities

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The exception to this rule is when the family wants to offer you food or a small token during the holiday or special occasion. It is really a matter of using common sense. If you are uncertain as to whether you should accept an offer or not, speak to the Volunteer Coordinator about your concerns.

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Spiritual

A person’s spirituality or religious affiliation is a very personal private affair. It is imperative that you respect the other person’s beliefs. Spiritual boundaries can be overstepped in several subtle ways such as:

• Focusing on their need for religion or spiritual faith
• Influencing someone regarding a specific religion either by sermonizing or giving them religious literature
• Giving solutions to their spiritual problems
• Making people feel guilty

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BASIC PATIENT CARE�

Patient Care

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Providing personal care to a person who is dying is a great privilege. Most of the hands-on care given to the hospice patient is provided by the nurse and the home health aide. However, just as the family provides some of the care, the volunteer may be asked to carry out some basic patient care. As a matter of principle, the volunteer should avoid doing care that makes them uncomfortable either because they have not been taught how or because they are asked to do one of the tasks that they’ve been instructed is inappropriate. Should you be asked by the patient or family to perform one of the tasks that are not part of the training, gently but firmly refuse. Always offer to contact another member of the hospice team if necessary.

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Patient Care

• Whenever care is given to a patient our primary concerns are comfort, dignity and safety.
• Comfort is achieved by proceeding slowly and cautiously whether you are applying lotion to hands and feet or feeding the patient. It is important to check with the patient as you go and to watch their facial expression for signs of pain or discomfort. Avoid jerking motions or applying strong pressure. Be gentle in everything you do. Don’t hesitate to ask for feedback.
• Dignity is assured by providing privacy and treating the patient in a respectful, adult manner. Regardless of behavior or level of understanding, the patient is to be treated in accordance with their age. Never talk to a patient as if he or she was a child.
• Safety is provided by being aware of risk of injury, by proceeding cautiously and by being a good observer.
• As a member of the hospice team, your observations about the patient and family are very important. Any change should be reported to the volunteer coordinator such as the following:

change in behavior, change in appetite, change in sleeping patterns,

difficulty swallowing or any rashes, sores or injury to the skin

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Patient Care

Some tasks are considered beyond the scope of a volunteer. This is to protect both the volunteer and the patient. These tasks include:

• lifting
• bathing
• vital signs
• applying dressings
• administering medications

Some of the basic patient care tasks that a volunteer may be asked to do include:

• observation and reporting
• grooming - combing the hair, applying lotion, make up
• assisting with dressing - putting on a sweater or jacket
• massage of the hands and feet with OK of nurse. Some diagnoses such as certain cancers cannot have massage of the hands and feet as it can cause damage.
• assisting with eating and drinking
• using a wheelchair
• operating a hospital bed

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SAFETY AND INFECTION CONTROL�

Infection Control�(Hand out)

How Germs Spread

• The main way that illnesses like colds and flu are spread is from person to person in respiratory droplets of coughs and sneezes. This is called "droplet spread."
• This can happen when droplets from a cough or sneeze of an infected person move through the air and are deposited on the mouth or nose of people nearby. Sometimes germs also can be spread when a person touches respiratory droplets from another person on a surface like a desk and then touches his or her own eyes, mouth or nose before washing their hands. We know that some viruses and bacteria can live 2 hours or longer on surfaces like cafeteria tables, doorknobs, and desks.

How to Stop the Spread of Germs

In a nutshell, take care to do the following:

• Cover your mouth and nose
• Clean your hands often
• Remind your children to practice healthy habits, too
• Cover your mouth and nose when coughing or sneezing
• Cough or sneeze into a tissue and then throw it away. Cover your cough or sneeze if you do not have a tissue. Then, clean your hands, and do so every time you cough or sneeze. Accepted practice is to cough/sneeze into your elbow.

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Handwashing

We recommend that you wash your hands, with soap and warm water,for 15 to 20 seconds. That's about the same time it takes to sing the “Happy Birthday” song twice! Washing your hands is the single most important step that someone can take to prevent the spread of infection.

The “Happy Birthday” song keeps your hands clean-

• Completely wet your hands and wrists. Keep your fingertips pointed downward.
•  Apply soap or detergent.
• Hold your hands lower than your elbows while washing.
• Work up a good lather. Spread it over the entire area of your hands and writs. Get soap under your nails and between your fingers.
• Clean under your nails by rubbing for 1 full minute.
• Rub vigorously
• Rub one hand against the other hand and wrist
• Rub between your fingers by interlacing them
• Rub up and down to reach all skin surfaces on your hands and between your fingers
• Rub the tips of your fingers against your palms to clean with friction around the nail beds.
• Wash 2 inches above your wrists
• Rinse well. Rinse from 2 inches above your wrists down to your hands. Hold your hands and fingertips down, under running water.
• Dry thoroughly with paper towels. 
• Turn off the faucet. Use a paper towel between your hands and the faucet. Never touch the faucet with your hands after washing. The faucet is considered dirty. Throw the paper towel into the wastepaper basket. Do not touch the basket.

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Infection Control�

Hand Sanitizer

The use of hand sanitizers has been approved by the Centers for Disease Control (CDC). Research has shown that the alcohol used in hand sanitizers are in some ways superior to hand washing with soap and water. The sanitizers may be in a small bottle or in single use packages. Sanitizers can be used when soap and water are unavailable or between hand washing. The term used is “hand hygiene”. If there is soil visible on the hands, soap and water is required.

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Infection Control�

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Hand Out Hand Hygiene Training

METHODS OF REDUCING RISK OF TRANSMISSION

In order to reduce the risk of transmission of bloodborne and other pathogens in health care facilities and to protect both health care workers and patients/residents from the spread of disease, the Centers for Disease Control and Prevention developed a new system of precautions. This new system has two parts:

1) standard precautions

2) transmission-based precautions (isolation).

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Infection Control�

Standard Precautions

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• Standard precautions are directed primarily at blood and body fluid transmission of diseases. They include all secretions and excretions ex­cept sweat, whether or not they contain visible blood. Standard precau­tions apply also to nonintact skin and mucous membranes.
•  Standard precautions are to be used for the care of all patients/residents re­gardless of their infection status. Standard precautions are designed to reduce the risk of transmission of bloodborne and other pathogens in health care facilities. Standard precautions include the following:

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• Handwashing must always be performed after touching blood, body fluids, secretions, excretions, and contaminated Items whether or not gloves are worn. Handwashing must take place after gloves are removed and between each patient/resident contact.

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• Gloves must be worn when touching blood, body fluids, secretions, excretions (except sweat), mucous membranes, and contaminated items. Clean gloves are worn before touching mucous membranes and non intact skin.

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Infection Control�

Standard Precautions

• Although saliva has not been implicated to date in HlV transmission, to minimize the need for emergency mouth-to-mouth resuscitation, mouthpieces, resuscitation bags, or other ventilation devices should be used.

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•  Health-care workers who have open lesions or weeping dermatitis should avoid all direct resident care and handling of resident equipment until the condition is resolved.

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• Remember that standard precautions apply to all patients whether or not they have a known infection! This is the best way to protect yourself and your patients from the spread of disease.

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Infection Control�

Standard Precautions

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• All healthcare workers should take precautions to prevent injuries by needles, scalpels, and other sharp instruments. After they are used, disposable sharp items and needles should be placed in puncture-resistant containers for disposal.

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• Although saliva has not been implicated to date in HlV transmis­sion, to minimize the need for emergency mouth-to-mouth resusci­tation, mouthpieces, resuscitation bags, or other ventilation devices should be used.

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• Health-care workers who have open lesions or weeping dermatitis should avoid all direct resident care and handling of resident equipment until the condition is resolved.

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• Remember that standard precautions apply to all patients whether or not they have a known infection! This is the best way to protect yourself and your patients from the spread of disease

Infection Control�

Transmission-Based Precautions (Isolation)

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There are three main ways that diseases are passed from one person to another. In a nursing home facility, the types of precaution or isolation used are: Contact, Airborne and Droplet.

These are called transmission-based precautions and are used in addition to standard precautions. A sign may be placed on the door of the isolated unit to identify the type of isolation and to give instructions to everyone entering. Al­ways follow the instructions posted on the door of the resident’s room.

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Infection Control�

Contact Transmission

Contact transmission is the most frequent mode of transmission in the health care facility. This involves direct body-surface-to-body-surface touch with physical transfer of microorganisms between the infected person and another. It may also involve contact with contaminated objects such as linens, equipment, and gloves that were not changed between residents.

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Infection Control�

Droplet Transmission

Droplet transmission. Droplets can be produced by the resident during coughing, sneezing, talking, or during procedures such as suctioning. Transmission occurs when droplets are propelled short distances through the air and come into contact with mu­cous membranes of the eyes, nose, or mouth or an open area on the skin. Droplet transmission is a form of contact transmission.

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Infection Control�

Airborne Transmission

Airborne transmission occurs when some particles of evaporated droplets containing microorganisms that remain suspended in the air are dispersed by air currents within a room or over a long distance. They are inhaled by the susceptible person.

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Infection Control�

PROTOCOLS FOR VOLUNTEERS

• If you see a sign on a patient’s door that indicates special precautions, go to the charge nurse to discuss whether a visit is permitted or not.

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• If visitation is allowed, ask for instructions on what you need to wear for the patient as well as your protection. Follow all instructions carefully.

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•  If you have any concerns during or after your visit regarding infection safety, discuss it with the facility staff or the case manager.

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Infection Control�

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Questions & Discussion

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SELF-CARE

TAKING CARE OF YOURSELF

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People who work in hospice, including volunteers, need to be sensitive to the special issues that surround them. We, as a group, tend to be givers and are not good receivers. We need to be needed and can be generous to a fault. We do a special kind of work few are able to handle and often see this as a special “calling.” On the downside, taking care of ourselves does not come easily. We need to work hard at it. However, if we wish to help the people we believe can benefit from our talents, skills, and caring, then it is vital we work as hard at nurturing ourselves as we do others.

Self-Care

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As a volunteer, you will be exposed to situations working with the dying and their families that will be difficult for you and create stress in your life. It is important that when this type of situation arises in your hospice work that you call the Volunteer Coordinator and discuss it. Share your concerns with other hospice team members also. Remember--you are a part of the team and need as well as deserve the support of your hospice family.

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Self-Care Ideas:

Read a book or a magazine

Walk in nature

Meditate

Sleep in on the weekend

Watch the clouds

Unplug from social media

Colour in, draw, or paint

Do yoga

Breathe

Exercise

Listen to music or a nature soundscape

Dance

Spend quality time with a loved one

Look at the stars

Declutter your social media

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Pray

Create a vision board

Watch the sunrise or sunset

Get out in the garden

Light a candle

Go to bed early

Call a friend that makes you laugh

Stretch

Take a nap

Go for a swim Start a gratitude journal

Write a bucket list

Watch a comedian on YouTube

Take a bath

Switch off your smartphone for 24 hours

Write a list of compliments to yourself

Do a jigsaw puzzle

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THE INTERDISCIPLINARY�TEAM�

The Interdisciplinary Team is the backbone of patient care. Together and in conjunction with the attending physician, they develop and implement a plan of care to provide hospice services to the terminally ill patient and their families.

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Regular team meetings and frequent communications among clinical staff and with the patient’s primary physician ensure that patient and family needs and goal are met and constantly reassessed.

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The patient and family are integral members of the interdisciplinary team.

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Under Medicare guidelines, it is the responsibility of the core team to see that services are provided.

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THE INTERDISCIPLINARY�TEAM�

THE INTERDISCIPLINARY�TEAM�����������

• Medical Director
• Certifies the terminal diagnosis
• Leads the interdisciplinary team in the development of a plan of care
• Provides consultation to other physicians regarding hospice care
• Assesses patient needs, manages symptoms, prescribes treatment
• Coordinates care with the interdisciplinary team

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• Social Worker
• Assesses patient and family emotional, social, spiritual, and financial needs
• Develops a plan of care to meet identified needs
• Provides direct counseling or refers patients and families to appropriate community agencies

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Chaplain

• Assesses patient and family spiritual needs
• Develops a plan of care to meet identified needs
• Provides direct counseling
• Assists with memorial preparations
• Provides consultations and referrals to community clergy
• Provides bereavement services

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THE INTERDISCIPLINARY�TEAM

Volunteer

Provides companionship and support to patient and family

Provides needed non-medical services such as letter-writing, respite for caregivers and family

Provides support at time of death and during bereavement

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Home Health Aide

Provides direct personal care to patient

Provides comfort measures, reports identified needs to RN case manager

Provides emotional support to patient and family

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Hospice Nurse (case manager)

Assesses patient and family needs

Develops plan of care to meet identified needs

Coordinates team visits and ensure implementation of approved plan of care

Coordinates care with attending physician, primary caregiver, and /or care center staff

Ensures symptom control and pain management

Provides patient/family teaching as needed

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Chaplain (Bereavement)

Provides emotional support by direct contact or by telephone

Provides ongoing contact in the form of supportive letters and newsletters

Provides regularly scheduled memorial services to celebrate the lives and memories of loved ones

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Pain Management

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Hospice is considered to be the leader in pain management. Much of the advance in pain treatment resulted from the hospice movement. Pain is experienced by :

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*70 to 90 percent of patients with advanced disease.

*40 to 50 percent have moderate pain

• 25 to 30 percent have severe pain.

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• It is estimated that almost all patients could be free of pain using the knowledge and tools available for the last 10 years. The remaining 1-2% could be offered sedation.

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Despite this ability to relieve pain, pain management throughout this country remains poor. It is particularly poor for the elderly, women, ethnic minorities and children. M. Scott Peck, MD. in his book Denial of the Soul, refers to inadequate pain management as “the most prevalent crime of medicine.”

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Pain is by its very nature, a subjective experience. As of yet, there is no way to measure one’s pain other than by the individual’s own description. In fact, the definition of pain most commonly used is “Pain is whatever the experiencing person says it is, existing whenever they say it does.” A more clinical definition of pain is: Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.” For this reason, hospice caregivers follow the principle “Believe the patient!”

Pain Management

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The pain experience is affected by several factors. The existence of pain has significant effects on all dimensions of quality of life. We usually look at four aspects of quality of life–

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• Physical
• Social
• Emotional
• Spiritual

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• Physical. The presence of pain typically limits physical activity and self-care. In order to avoid pain, patients will move as little as possible. If moving hurts, they stop moving. This means that they become more dependent for care and they develop other problems such as pressure sores (bed sores) or loss of movement in the joints. Pneumonia is also a common result of inactivity. Coping with unrelieved pain also demands physical energy. The patient who is struggling to deal with pain will lack the energy to do the important things needed to prepare for their death. Pain may become their entire focus. For most people, loss of the ability to care for themselves leads to a loss of self-worth and even depression.

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Pain Management

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• Social. Social pain is not always a result a physical pain. It can be a emotional/spiritual suffering due to the loss of companionship, hobbies, etc. Emotional pain can be suffering due to regrets, unfulfilled desires/wishes, and loss of family/friends. spiritual pain can be suffering caused by the questioning of "Why is this happening?" "Is there a God?" "Did I live my life like I wanted to?” “Was I kind enough?" etc.

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• Emotional. Pain and depression often go hand in hand. The lack of rest that accompanies pain may cause irritability. The patient may feel anxious, fearful, angry or despondent. They may give up all hope.

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•Spiritual. Patients experiencing unrelieved pain may also experience a loss of faith in their prior beliefs. They may think that they have been abandoned, that the God they believe in is not a just or good God but a vengeful and punitive God. They may question the existence of any higher power.

Pain Management

Role of the Volunteer: ��

• The volunteer plays a key role as an observer and reporter of the patient’s problems. Pain is a critical issue for the hospice patient, so any problems related to pain management must be reported to the hospice RN immediately.  
• Although you have learned some things about pain management, your role is not to teach the patient and family what you know. It is to report to the hospice team and to support what the team has already taught. You might say, “It is important to follow the instructions you were given. If you are unsure, let’s call the nurse to verify.” Always encourage the patient and family to address their concerns with the proper people. It never hurts to call and check.
• There are strategies that a volunteer can utilize when a patient is in pain and you are waiting for a medication to take effect or to reach help.
• Remembering how anxiety and fear increases pain, your very willingness to remain with the patient will decrease their pain. By being present, you reduce their anxiety. One strategy that most people find helpful is distraction. Some patients may want you to read to them, some may watch television, some may want to sing, to pray or to listen to music. For some just sitting with them and talking quietly may be helpful. If they don’t know what helps them, try the approaches mentioned.

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Pain Management

OTHER SYMPTOM MANAGEMENT

• When we think of the experience of dying, we tend to think of pain as the most prominent and distressing of all symptoms. When patients are asked the most distressing symptom for them, they usually say fatigue. Fatigue effects the quality of life by preventing the dying patient from using his or her time in ways that allow for enjoyment and completion of unfinished business. The volunteer plays a crucial role when the patient has a problem of fatigue. Some of the following are approaches that the team might make when fatigue is identified as a patient problem:

Pain Management

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When the patient appears too tired to talk, perhaps they would like the volunteer to read to them, play music, or simply to sit quietly by.

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 Losses of appetite, nausea, and weight accompany most terminal illnesses. This is a natural part of the dying process since the body is declining rather than repairing and restoring. Food equals love in our society. Often the family and friends are very distressed and believe that if the patient eats, they will live longer. This may set up a conflict between the patient and their family because the patient doesn’t want to eat. “They are not dying because they are not eating. They are not eating because they are dying." The body is getting ready for a spiritual journey and not a physical one; food is not the most important need. Forcing food can actually cause the patient to feel sick. The hospice staff will educate the family about this issue.

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As a volunteer, avoid urging the patient to eat or joining the family in over emphasizing the need for food. It is appropriate to offer food and to offer those things that the patient likes but if they say “no thank-you,” that must be accepted.

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Pain Management

ADVANCE DIRECTIVES� �

Advance Directives

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Hospice volunteers are in a unique position to support

patients’ and families in honoring and respecting the

decisions they make about medical treatment. It is

important that they have a good grasp of the rights and

responsibilities of the patient as well as some general

guidelines for what is considered morally and legally

acceptable. For this reason, this part of the training is

designed to provide some of that basic information.

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Advance Directives

In making decisions about medical treatment, it is important to remember the rights under the Patient Self-Determination Act, which reinforce the patient’s ability to refuse any unwanted medical treatment. In the context of hospice, the patient is electing comfort measures over life-prolonging treatments. Making these decisions requires that the hospice patient be fully informed about their prognosis, diagnosis, alternative treatments and the benefits and burdens of those treatments. The legal requirement is that when a patient signs their hospice election, they are making an informed decision. Many patients and their families do struggle on an ongoing basis with their decisions and need information and support from the hospice staff.

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Advance Directives

When patients express their wishes in writing, in advance of the need, they make the process much easier for their family members and the providers of their healthcare. Most agencies and institutions do everything they can to assist patients in completing their advance directives if they have not already done so. If they have an advance directive, a copy is added to the medical record.

�Some treatments are not so obviously futile. Those treatments (like artificial food and fluids) are not always clearly futile. They won’t save a life, but they may postpone the death. In those cases, the treatment decision can be made based on whether the treatment will benefit the patient more than it will burden or harm them.

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The volunteer needs to be very clear about avoiding entering in to a family decision-making. If questions arise about what is the “right thing to do,” the volunteer should defer to the other members of the hospice team or recommend to the family that they request a conference with the hospice team. The volunteer should notify the hospice team if aware of family conflicts regarding decision-making.

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Advance Directives

Definitions�

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Patient Self-Determination Act (referred to as the “PSDA”): This law was passed by the US congress in 1990 and became effective in January of 1991. The law requires all health care providers to inform each patient at the time of admission about their rights to refuse any unwanted medical treatment and their right to make their decision in writing, in advance. The law further directs each state to provide a preferred document for the purpose of specifying ones wishes in advance. The law also forbids health care providers from discriminating against an individual patient based on whether or not they have completed an advance directive document. In other words, an agency cannot require such documents as a condition of admission.

Advance Directive is a term used to describe treatment decisions made in writing while the patient is capable of decision-making. The documents do not become effective unless and until the patient is unable to make decisions for themselves. The preferred document in the State of Idaho is the Power of Attorney for Healthcare (formerly called the Durable Power of Attorney for Health Care).

Advance Directives

Definitions continued�

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DNR is the abbreviation for “Do not resuscitate.” It excludes the act of chest compressions, defibrillation and artificial breathing for a patient when their heart and or breathing stops. This is an emergency treatment that is performed unless there is written evidence to the contrary. In those who are elderly or who are terminally ill, this is an inappropriate and invariably unsuccessful treatment for the frail elderly or the terminally ill. It is considered by most to violate the right of the patient to die with dignity. Most hospice patients have a “Pre-hospital DNR” form in their home. The form is signed by the patient and by their physician. If 911 is called, paramedics will honor the written form when they arrive. In Idaho, this form is called a POST

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 PAHC is the abbreviation for the advance directive document “Power of Attorney for Healthcare.” This document allows the patient to name an agent to make health care decisions in the event that the patient is unable to do so. In addition to naming an agent, the person can specify an alternate agent and can write some of their specific directives to the agent. The document can be revoked or changed at any time. In Idaho, this is the preferred Advance Directive because it protects the agent when making any health care decisions. Some of the decisions that individuals might specify in advance to their agent are issues about resuscitation; artificial nutrition and hydration; comfort or hospice care.

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 Bioethics is a field of ethics relating to healthcare issues. Ethics are the rules of conduct that have been adopted by a particular group. There are ethical principles that guide the actions of the healthcare professionals.These principles include respect for patient autonomy, truth telling, non-maleficence (do no harm), duty to help and justice.

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Idaho POST Form

On July 1, 2007, Idaho’s governor signed into law a revision to the Medicaid Consent and Natural Death Act (Idaho Code §§ 39-4501). This change created a standardized form that allows all Idaho citizens over age 18 to express their wishes regarding how they want to be treated from a medical perspective. This form is called the Physician Orders for Scope of Treatment, or POST. The POST is a doctor’s order and must be signed by the patient’s doctor in order to be effective. It replaces the former Idaho Do Not Resuscitate (DNR) and Comfort One programs.

What is a POST?

• The Physician Orders for Scope of Treatment (POST) is an extremely important tool with a number of unique features designed to help make sure your wishes are honored if you can no longer speak for yourself to make healthcare decisions.
• The POST is designed to help health care professionals (doctors, nurses, emergency medical services, long-term care/nursing home staff) and family members understand a person’s goals for care and to honor the treatment wishes of that person. The POST form is a short summary of treatment preferences and a physician’s order for care that is easy to read in an emergency situation. The POST form is not intended to replace an advance directive document (living will or durable power of attorney for health care) or other physician orders.

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Advance Directives

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Idaho POST Form

• You need to have a POST if:
• You are severely or terminally ill or elderly. Having a POST in place is advisable for people who are severely or terminally ill or elderly. For older people and those terminally ill, the trauma involved in CPR may do more harm than good. For example, an older person with chronic care issues could have CPR successfully performed thereby restarting the heart and/or lungs after cardiac or pulmonary arrest. However, there may have been oxygen deprivation to the brain prior to or during this process. Such deprivation can cause damage that affects quality of life.
• How will EMS know I have a POST?
• • A POST must be immediately visible to emergency personnel in order to be honored.
• • Having the original signed POST in an accessible place is advisable.
• • A special POST bracelet or necklace can be obtained from A Better Way Coalition, Inc. to make it clear that a valid POST is in place and controls the situation. (See “Idaho POST ‘DO NOT RESUSCITATE’ Jewelry Form”)
• • A wallet card is available at no cost when you register your POST in the Idaho Health Directives Registry. The card gives health care providers electronic access to your POST document.

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Advance Directives

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Day Three:

Welcome

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NUTRITION AND HYDRATION AT THE END OF LIFE� �

• Issues about nutrition and hydration at the end of life tend to be emotional and complex for the family members and the staff caring for the dying patient.

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• Attitudes and beliefs about what constitutes loving care as well as cultural norms are evident when it comes to food and fluids. Just as the hospice team may have to explore these issues with family and nursing facility staff, the volunteers need the opportunity to discuss their feelings and to become better informed about the issues.

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NUTRITION AND HYDRATION AT THE END OF LIFE

Some of the terminology that needs to be defined includes: �

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Artificial Nutrition: This is supplying the body with food-like material by artificial means. Nutrients may be provided enterally (through the gastrointestinal tract via a tube that is inserted through the nose (nasogastric tube) or directly into the stomach (gastrostomy tube) or into the intestines. Nutrients may also be supplied through the circulatory system by placing a tube in a vein or directly into the heart, called “TPN” for Total Parenteral Nutrition, used when the gastrointestinal tract is not able to absorb and utilize nutrition in a normal manner. The formula is complex, requiring considerable expertise and frequent laboratory monitoring. The patient is at risk for infection and requires considerable equipment to administer the solution. Artificial Nutrition is usually not appropriate for hospice patients as the risks far outweigh the benefits and it does not prolong life at the end when appetites are declining. Artificial Nutrition will prolong life in those who have recently had a stroke or some event that prevents the intake of food.

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Artificial Hydration: is provision of fluids through an intravenous (IV) access to a vein. It is usually not appropriate for dying patients unless they have had a temporary event of nausea with vomiting and could return to eating and drinking on their own.

The normal course of most terminal illnesses leads to a gradual decline in appetite and consequent weight loss. As the body is “shutting down,” the need for food decreases. Food is the fuel that the body needs to restore energy and rebuild body tissues. When the body is no longer repairing and restoring, the amount of food needed is sharply decreased.

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NUTRITION AND HYDRATION AT

THE END OF LIFE

FAMILY DYNAMICS AND TERMINAL ILLNESS�

Family: The Unit of Care

The family is considered the unit of care in hospice. The services we provide extend to family as well as the patient and continue into the bereavement program after the patient has died.

• Families often bring hospice its biggest challenges because of the diversity and complexity of the people involved. Members are facing one of life’s greatest issues and reactions to the dying process can be as varied as the people involved.

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• The family needs to be viewed as a specialized group that functions as a complete system composed of individuals. Within this group, there is a constant need to maintain balance or what is called "“homeostasis.” This balance may be achieved through healthy or unhealthy behavior and it is obtained through the roles, rules, and functions that each family member plays. These defined roles and functions have gradually developed over their family life history. When someone within the family becomes very ill, the dynamics of the family change to accommodate this shift.

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• How a particular family operates can be determined by their level of emotional functioning and the boundaries families set for themselves.

FAMILY DYNAMICS AND TERMINAL ILLNESS�

Interventions:�

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• WHAT WE CAN AND CAN’T DO...We will encounter families with problems of all kinds, and families with long histories of troubled relationships. There will be problems we cannot solve, but we can ease the burden of caring for the patient, and we can demonstrate our interest/concern, thus strengthening the family so they themselves can cope with their life situations as they choose.

• DON’T TAKE SIDES...It is important to avoid taking sides in a family. Sometimes we may feel that the patient is misunderstood, or that one family member is being taken advantage of by another. In these cases we may find ourselves angrily taking sides. But, remember our assignment is not to set ourselves up as more understanding and loveable than the patient’s own family. Instead, we should try to foster communication and understanding among family members in every way that we can, working closely with the rest of the team on the case.

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FAMILY DYNAMICS AND TERMINAL ILLNESS�

Interventions:�

• REMAINING NON-JUDGMENTAL...We must also guard against imposing our own standards and values on the families we serve; and we must always try to avoid being judgmental. Respect for the family means recognizing the fact that each member will have to deal with the crisis in his or her own way, and sometimes these ways are not our ways.

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• PAYING ATTENTION TO FEELINGS...The family living with a diagnosis of advanced disease for one of its members is a family in limbo--afraid to hope or plan for the future, struggling with the prospect of death and loss--not only the loss of the patient but the loss of family life as it has been and will never be again. Just as the patient goes through various stages in his or her feelings about the illness, family members also experience various emotional states. Like the patient, the family does not experience these feelings in any set sequence, or remain steadily at any one level. This means that the volunteer going into the home has to be prepared to listen and to accept a variety of emotional responses, without judging or criticize.

FAMILY DYNAMICS AND TERMINAL ILLNESS�

THE NEEDS OF THE DYING AND THEIR FAMILIES

The Patient needs…

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• To talk about their fears of abandonment, intense pain, concern for family, or physical deterioration and dependence, and to allay these fears as much as possible.

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•  To deal with increasing physical deterioration and depen­dence. Insisting on too much independence can add to stress and suffering. Permit them to maintain whatever dignity and control of self-care they can manage. Remember the need is for recognition as a human being and not just as a body or disease.

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• To be treated as a whole person.This includes honoring many aspects of their life: emotional, cultural, spiritual, financial, self-image, physical and sexual, personal lifestyle and relationships. Difficulties in one of these areas may cause more suffering to the person than their disease and its treatment.

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The Patient needs…

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• To have their moods understood and accepted. To have others listen, without judging or explaining, to even the most difficult feelings: anger, despair, guilt, denial, resistance or sorrow. Often prolonged anger and depression are covering up a deep feeling of sorrow and held-in grief at losing everything that is important to them.

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• To be at home as much as possible or to feel at home. This can include, when in the hospital or convalescent facility, little pleasures such as haircuts, plants, home-cooked meals, posters or music they can enjoy, personal pajamas and frequent visits by their close family and children and intimate, private times with their partners.

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•  To feel that their family can get along without them after their death. They need to be able to honestly commun­icate with family members what their feelings and needs are. They may want to cry with them while saying goodbye and to have a few supportive people with whom they feel comfortable in silence or as they are dying. Completing unfinished business with someone, whether by talking or writing to them, will ease their minds and hearts.

The Patient needs…

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• To be as pain free and alert as possible. Remember psychological, emotional or spiritual pain can accentuate the experience of physical pain.

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• To find a meaning for their lives, suffering and deaths. Sometimes a minister or priest can lend valuable assistance. Others need to discover this meaning on their own terms and may need help in finding ways to give the days remaining to them a sense of purpose. Learning to experience their remaining days with full awareness and appreciation for life, coming to accept others and to forgive those who have hurt them, letting go of attachments, offering their pain to their higher power, or learning to communicate honestly with those they love — all these things that a seriously ill or bedridden patient can still do to continue growing and participating in life.

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• To feel the respect and love of those who care for them. This is shown by spending time with the dying person, and by allowing them to be themselves and to die in the way they choose. You can show caring by touching them, holding hands and by sharing your life, and sometimes your tears, with them. Though they may never say it, even the cranky or depressed person is appreciative of your continued visits when they feel your acceptance and love. By doing nothing more than listening, you may be doing more for them than you ever know.

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The Family needs…

• To communicate about their problems, fears, and pain. They are often overlooked in terms of their “disease” and can build up resentment and guilt, as well as physical and emotional burnout if they are caring for a dying person. They need to have people ask them how they are doing, and listen to their difficulties, without judging how they are coping, and without trying to “rescue” them.

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• To have time alone, when nothing is expected of them. Most family members will want to get out and do shopping or something enjoyable, if only for a short time. To understand the difference between accepting the coming death and wishing for the death. Sometimes acceptance is confused with wanting a person to die, and family members may be afraid to grieve in anticipation of the death. Crying can actually bring the family closer, and into a sense of trust that the death is all right and acceptable, even though it makes them sad.

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•  Like the dying person, the family has a right to deny the full implications of the disease. However, when this denial prevents the family from speaking honestly, the result is isolation, both physical and emotional, for the dying person.

Signs & Symptoms of Approaching Death�

What happens when someone dies?

• Many times caregivers for the dying want to know what signs they can look for that hint at approaching death. Although there is no absolute progression of stages that the dying go through, there are some signs that you can watch for to know that death is near.

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• There are two main phases that the dying go through prior to actual death. The first stage is called the transitioning phase of dying and the second phase is called the active phase of dying.

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• It is important to understand that not all patients will clearly exhibit these stages—this is just a guideline. The signs that the dying person exhibits will be heavily dependent on the nature of the illness or physical condition of the patient. The pre-active phase of dying may last weeks or months, while the active phase of dying is much shorter and lasts only a few days, or in some cases a couple of weeks. �

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Signs & Symptoms of Approaching Death�

Signs of Dying – Transitioning Phase

• withdraws from social activities and spends more time alone or at home.
• speaks of "tying up loose ends" and may be concerned with finances – wills, trusts, and insurance.
• may show a desire to speak to family and friends and make amends or catch up.
• may experience increased anxiety that can result in restlessness, the inability to get comfortable, confusion, agitation and nervousness.
• loses interest in daily activities.
• has an increased inability to heal from bruises, infections or wounds.
• loses interest in eating or drinking.
• has increased periods of inactivity, lethargy, or sleep.
• may begin to speak about dying, state they are going to die or ask questions about death.
• may state that they see people or pets that are already dead. This is called "near death awareness" A large percentage of hospice professionals believe that our Higher Power (God) allows us glimpses of those we loved to give us peace and guidance. A small percentage think it is a result of the body chemicals being off balance from the body shutting down. Either way it is comforting to the dying person, but it can be frightening for the family/friends. They may think that their loved one is seeing ghosts or hallucinations and that we need to do something about it. The best thing is to inform them that this is absolutely normal, it is not a scary thing, and that (depending on their religious beliefs) their higher power gives them this gift of seeing their loved ones to help guide the way. It is always comforting for the dying person.
• will experience edema - the swelling of the body or extremities with fluid.
• will experience Apnea - periods where breathing stops for several seconds before starting again. This can happen while awake or sleeping.
• may request to speak with a religious leader or show interest in praying or repentance.

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During the transitioning phase, the patient….

Signs of Dying -- Active Phase

• experiences major changes in respiratory health; buildup of fluid in the lungs, congestion, longer periods of apnea, and abnormal breathing patterns such as cycles of slow then fast breathing.

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• may state that he or she is going to die soon.

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• may have difficulties swallowing liquids or be resistant to food and drink.

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• may become restless, pulling at bed linen and having vision of people or things not evident to us.

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• experiences increased difficulty waking from sleeping, which includes the inability to arouse her/him at all, or a coma-like state.

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• is unresponsive or cannot speak.

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• does not move for longs periods of time.

During the active phase, the patient…

Signs of Dying -- Active Phase

• has cold hands, feet, arms and legs. S/he may say that they are numb or cannot feel at all.

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• has mottled arms, legs, hands and feet, giving a blue or purple splotchy appearance to the skin.

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• decreased urination with urine darkening in color or changing colors.

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• experiences urinary or bowel incontinence.

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• has a loss of hearing, feeling, smell, taste or sight at the final stage. The school of thought is that hearing is the last sense to go. Eyesight is usually the first. We educate families that their loved ones can hear them until the second they depart. We encourage them to continue talking to them quietly and calmly as long as they wish, even when their loved ones can't talk back. Saying goodbye, telling them that they will take care of mom/dad, the house, etc., saying thank you for loving me and teaching me, I am strong and will survive because you did a great job (I always encourage children to say this to their parents) is really helpful.

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• oral secretions may become more profuse and collect in the back of the throat. This is called the “death rattle.” Reassure the family that it is not painful nor does the patient struggle. This is a result of increased weakness causing inability to clear the throat or swallow. It can also be a sign that the heart can no longer pump effectively. Call the nurse if this occurs. There is medication and positioning that can help with it.

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During the active phase, the patient…

How to Know if Death Occurs

• No breathing
• Eyes fixed on a certain spot
• No heartbeat
• Eyelids slightly open
• Jaw relaxed and mouth slightly open

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Discussion &

Questions

STAGES OF LOSS/GRIEF AND BEREAVEMENT

Grief

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Death is an individual thing. No two deaths are alike as each person finds their own way in this last important phase of life. Our goal in hospice is to make this journey as comfortable as possible and to help the patient transition into a peaceful death. We must also recognize, however, that this ideal cannot always be reached or we may have unrealistic expectations of the death process.

• The loss, grief, and bereavement processes can better be understood if we first define them.

• Bereavement: is the event—the loss, the death, the divorce, the job loss, the loss of money, the loss of self-esteem, home, the move to a new locality, of children leaving the home.

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• Grief: is the emotional feeling—anger, frustration, loneliness, sadness, guilt, regret, to the perception of the loss.

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• Mourning: is the process of resolving the grief—mourning has a beginning (the loss) and it can have an ending (the resolution).

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STAGES OF LOSS/GRIEF AND BEREAVEMENT

Stages of Loss or Dying

Dr. Elizabeth Kubler-Ross, who worked extensively with dying patients, was a pioneer in developing a theoretical framework of what happens to a person when they are told they have a terminal illness. These stages have since been expanded to consider any type of loss a person may have and the process they go through in handling it. The stages listed below are guideposts to some of the emotions patients (and families) may experience during this time.

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STAGES OF LOSS/GRIEF AND BEREAVEMENT

DENIAL Stage

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• Denial is a protective defense that most of us have used at one time or another. When a patient has been told he/she has a terminal diagnosis, the patient may deny or refuse to accept the diagnosis and their own impending death. Feelings of shock, numbness and disbelief are common. People often make comments such as “No, this isn’t happening to me!” or “There’s been some kind of mistake!”

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• It is important to recognize the importance of denial and to respect the patient’s need to use it as a coping mechanism.It allows them time to absorb the news within a timetable they are comfortable with and to maintain a sense of control.

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• Do not attempt to force a patient to break through the denial. When they are ready to move to the next stage, they will do so. In some cases, they may never leave the denial stage or may return to it when the need arises. Your role as a hospice worker is to be a good listener and give them the time and opportunity to work through their denial at a pace at which they are comfortable.

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ANGER Stage

• As the reality of the situation begins to become apparent to the patient, anger becomes the predominant emotion. In this stage, the dying person begins to express anger, resentment, rage, and frustration. These emotions are usually vented towards those people who are closest around them, particularly family and hospice staff. The patient may also be angry with the medical community who was involved in providing the diagnosis and subsequent treatments. This can include doctors, hospital staff, insurance companies, etc. Anger can also be directed towards God/Higher Power or fate for letting this happen.

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• This period of time is very intense for all concerned. Although these feelings are normal and appropriate, it can be difficult for staff to bear the task of being the recipient of the patient’s anger. Keep in mind that what the patient is experiencing is helplessness and fear. Do not take his/her behavior personally or try to avoid the patient. Our patience and understanding are needed more than ever during this time. Listening, providing reassurance and giving them some sense of control can help to reduce the anger and allow them opportunity to move into the next stage.

• If the anger reaches the level of being verbally abusive to the staff, it is important that guidelines and limits are set with the patient. Let the patient know you will be there for them but that certain behavior such as verbal abuse cannot be tolerated.

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BARGAINING Stage

•   It is during this stage, the dying person makes a vow, either silently to God/Higher Power or aloud to another person, to bargain for more time. Good behavior is pledged in exchange for an extension of their life. This is a common human reaction to adversity and is an attempt for the patient to regain some control in their life. Guilt is often an underlying aspect of this process and bargaining statements often start out with expressions such as:

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• “If only I had……”
• “If I get well, I’ll……”
• “If I have enough……”

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• This stage can hold great therapeutic benefit for the patient. By listening carefully to what the patient says, knowledge can be obtained regarding feelings of guilt regarding the past, the type of bargains attempted and to whom, and possible unrealistic expectations. From this, hospice staff can often define the patient’s important emotional and spiritual issues or concerns.

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• As the patient works through issues of guilt, forgiveness, and reconciliation, it is important that hospice staff remain non-judgmental. During this time, patients may try various therapies or remedies such as mega-vitamins, meditation/guided imagery, or prayer in hopes of cure or remission. This can have a positive effect in that it gives patients some modicum of control.

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DEPRESSION Stage

• Depression is the emotional reaction to dealing with any major loss. The terminally ill person grieves over his or her own death and the loss of family, friends, home, and a future. It is often defined as anger turned inward. During this stage, patients may withdraw from loved ones. They may also experience guilt or anxiety over their situation.

• This stage is also accompanied by many emotional and physical symptoms such as tearfulness, sadness, lack of concentration confusion, irritability, insomnia, appetite decrease, and fatigue. A skilled assessment should be done by a trained hospice professional such as a social worker to determine what factors are contributing to the depression and what therapeutic interventions are most appropriate. In some cases, the patient is experiencing a major depression in which an anti-depressant medication may be needed. Sometimes there is a strong tendency for staff to want to cheer the patient up. This denies the patient the support they need to grieve their losses. As difficult as it may be, according to Kubler-Ross, this is a necessary stage as it enables them to begin to accept their own death.

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ACCEPTANCE Stage

The final stage is described as the acceptance stage. It is the beginning step

to a peaceful death. The fact that the person is preparing for death does

not mean he or she wants to die only that they accept its inevitability.

Kubler-Ross sees it as a time that the patient is almost devoid of feeling;

neither happiness nor emotional pain exists.

Many times when patients reach the acceptance stage, they become quite withdrawn. They may stop communicating with their loved ones, and the families/friends feel like they have been "ousted" or the patient is angry with them.... reassurance that this is normal behavior is important. The patient is accepting their demise, internalizing their plan.

The patient has usually said his/her farewells to all but a few. Reconciliation and resolutions have been made. Activity and outside stimuli are no longer important. In its place is a peaceful repose and communication becomes non-verbal.

Hospice staff can benefit the patient and family through relieving the accompanying symptoms of dying and providing a quiet presence. Interventions might include just holding the patient’s hand or sitting quietly with the patient. It is the time for the hospice staff to also say goodbye and to let go and allow the patient their final journey.

Keep in mind that the path a dying person takes is specific to that individual. There is no clear-cut formula that applies to everyone. These stages of dying need to considered as guideposts to help you understand that emotional ladder people climb in their journey towards death. Some people never leave the first rung and some people go up and down the ladder. Not everyone reaches acceptance. Use this information as a helpful tool not as a specific roadmap.

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NORMAL GRIEF

Immediately following a death, there is a sense of shock, numbness and disbelief that can last minutes or weeks. The person may feel panicked or overwhelmed and experience strong physical reactions. When there has been a lengthy illness, the bereaved may experience a sense of relief for the person who died and for themselves now that the stresses of caregiving are over. This period allows the person to take information in at a slower rate and to prepare for the adjustments that lie ahead. Most people who suffer a loss, experience one or more of the following:

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Social: Withdrawal from others, Dependence on others, Fear of being alone

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Cognition: Confusion, Sense of unreality, Poor concentration, Forgetfulness, Denial, Disbelief. Constant thoughts about the person. Dreams of the deceased

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Physical: Palpitations, Shortness of breath, Crying, Diarrhea, constipation, vomiting, Tightness in the chest or throat, Change in appetite or sleep patterns, Lack of energy; Fatigue

Spiritual: Blaming God/Higher Power, Lack of meaning or direction, Loss of faith, Wanting to die/join the dead person

Emotional: Sadness, Numb, Empty, Flat expression, Guilt and self-reproach, Anger and/or anxiety, Indifference to daily activities.

Bereavement

• Grief is very specific and personal to the person going through it, therefore, all people grieve differently. To help determine the type and degree of grief a person may experience, we look at several factors regarding the individual that will affect this process.

• Who the person was - What characteristics make up this person, what is their gender, age, roles in life?

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• The nature of the attachment - What was the relationship to the person who died—child, spouse, parent, friend? Was it a strong emotional bond? Was it loving or problematic? Are there multiple or significant roles lost due to the death?

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• Mode of death - How did the person die? Was it expected or sudden? Traumatic as in suicide, homicide, car accident? Was there time to prepare and work through unfinished business? Was the death age-appropriate or not?

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Bereavement Continued

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• Historical antecedents - What type and number of losses has been experienced earlier in life. Were they at a young age? What significance did they have? Have there been other important psychosocial issues such as mental illness, chronic illness, substance or other types of abuse?

• Personality variables - What type of personality does the grieving person present? Are they needy and dependent on others? Narcissistic and demanding of attention? Rigid and controlling? How do they express their emotions or do they hold them in?

• Social variables - What type of social resources does the person have. Is there a supportive family? Do they have church members or friends they socialize with? Have they lost friends or associates because of the death?

• Concurrent stresses - What other issues are they dealing with at the present or most recent time? Have they had other losses recently? Are they dealing with illness themselves or with another significant person in their lives? Are there serious economic, social status or other important changes?

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• When a bereavement assessment is made, all of these aspects are taken into consideration to determine the strength and abilities a person may have to grieve their loss. The higher the risk factor, the more important it is to see the person has the resources and tools the help them through this process.

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• Grief work is one of the hardest things a person will ever have to do. It is painful and uncomfortable but also necessary. For a person to successfully work through their grief they must go through the four tasks of mourning that J. William Worden discusses in his book, Grief Counseling & Grief Therapy.

• J. William Worden’s Four Tasks of Mourning

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Task One: To Accept the Reality of the Loss

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Task Two: To Work Through the Pain of Grief

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Task Three: To Adjust to an Environment in Which the Deceased is Missing.

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Task Four: To Find an Enduring Connection With the Deceased While Embarking on a New Life

HOW TO HANDLE DIFFICULT SITUATIONS�

VOLUNTEER’S ROLE IN EMERGENCY/DEATH OF PATIENT

As time of death approaches, continue to be as honest and straightforward as possible, but never, under any circumstances, attempt to predict the time of death.

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If the family requests that you pray with them and you are comfortable doing this, do so.

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Assist the family, if necessary, to recognize that death has occurred when the following signs are present:

• no breathing/no heartbeat
• loss of control of bowel and/or bladder
• eyelids slightly open/eyes fixed on a certain spot

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Call the RN Case Manager or the on-call RN. DO NOT CALL THE POLICE, 911, OR THE SHERIFF’S OFFICE unless the family makes this decision.

If it is the wish of the family, you may assist with making the necessary phone calls, e.g., the mortuary, appropriate family members, etc. If a volunteer calls the mortuary, they will need to have the patient’s date of birth, doctors name/number, diagnosis, next of kin's contact, and the hospices contact information.

Render whatever services that are needed (i.e., preparing food, washing dishes, assisting with family needs)

Be supportive to family members, encouraging them to grieve at the bedside of the loved one but respecting individual needs.

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EMERGENCIES

If you should encounter any type of emergency while in the patient’s home, notify the office at once. Examples of emergencies would be the following: a serious change in the patient’s condition, lack of caregiving when needed, suspected chemical dependency or suicidal risk (see the following), or potential abuse including verbal/emotional.

Suspected abuse: Our regulations state that the staff / volunteers will notify the Administrator immediately of any suspected abuse. “The volunteer is to notify the Volunteer Coordinator immediately for suspicions of abuse. The  Volunteer Coordinator will immediately inform the Administrator. If the  Volunteer Coordinator is not available, the volunteer is to notify the Administrator themselves.”

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SUICIDE POTENTIAL, RISK

Volunteers noting the presence of high-risk criteria should immediately notify the Volunteer Coordinator, Administration, or Clinical Supervisor.

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SUMMARY

If you have any doubts or concerns when in a home or facility regarding the safety of a patient or family member, notify the hospice program. A small issue that is not handled appropriately or in a timely manner can become a major problem. It is always better to be safe than sorry.

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Your Almost Finished with your Training!

VOLUNTEER DOCUMENTATION�

• The joy our hospice work is seeing patients and their families. Working with them, building trust and rapport, knowing that we are having an impact on their lives. This is the rewarding aspect that has brought all of us to this field of work. With that joy also comes responsibility and documentation remains one of the biggest challenges. No one likes to document! It’s tedious, boring, feels repetitive at times and takes away from our “important” work.

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• The reality is that documentation is extremely important. It is the legal record of what we have accomplished. Without it, hospice cannot get insurance payment, communicate to the other team members, or record our progress.

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VOLUNTEER DOCUMENTATION

• There are specific legal requirements regarding documentation that you need to be aware of. The volunteer documentation is considered part of the patient’s medical record and, therefore, has all the same legal and time constraints that the other team members must follow.

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• The maintenance of medical records is a specific Condition of Participation under the regulations of Medicare. Improper procedures can result in a hospice being out of compliance and losing their certification status. This, in effect, closes a hospice program should that occur.

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• To help you understand the role of volunteer and documentation, we begin by sharing the administrative policy.

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VOLUNTEER DOCUMENTATION

Policy

The medical record or chart of the patient is a legal document that must be accurate, objective, complete and concise. The volunteer makes an important contribution to the care and treatment of the hospice patient and family. Their observations and actions help the hospice team determine future care as well as the need to modify or improve the current plan of care.

Procedure�

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Volunteers are asked to complete a Hospice Volunteer Documentation Note for each patient seen. Notes can be completed by hard copy, on a Volunteer Visit Form, or Electronically, through Kinnser.

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A Note is used for each visit, then submitted to the Volunteer Coordinator for inclusion in the chart. Indicate the date of contact, type of contact, whom the contact was with, condition of the patient or family, services provided and total time spent including travel time and actual mileage. Brief notes about the contact need to be written as well.

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Because the chart is a legal document, the following rules apply:

• All entries must be made in ink and should be printed or written so they are legible
• All entries must have your printed name and be signed
• All entries must be in chronological order (in the sequence of occurrence and must contain date, time (including travel time) and mileage
• All entries must be factual
• All entries should be brief and exact
• The chart is confidential so the contents may not be shared with others if they do not have a legitimate “need to know”.
• When an error is made while charting, no erasures, whiteouts or any type of obliteration of any entry may be made. If an incorrect entry is made, a single line should be drawn through the entry and a notation made and initialed
• Use the present tense on all entries. Avoid abbreviations.

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Documentation

Any concerns or issues regarding documentation by a volunteer should be directed to the Volunteer Coordinator for clarification.

Part of the legal requirements for medical records is that all documentation must be turned into the hospice program on a timely manner and be filed in the patient’s chart within seven days of service.

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Because of this, it is imperative that volunteer documentation be turned in on a weekly basis the same as other team members.

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General Recommendations for Documentation

When documenting, try to be as objective as possible. Write your observations and not your interpretation of the situation. Personal comments or conclusions should be avoided. If you want to share specific information, quote the patient or family member directly by writing as follows:

“The patient stated, ‘I get so tired of fighting this whole thing sometimes.’”

This is better than writing a comment such as “the patient doesn’t want to continue to live.”

Try not to be judgmental or critical in your writing. Even though you may not personally agree with a particular situation, it is not our role to question the patient or family in their thinking, actions, or reactions.

Avoid using labels. Using certain words can be considered offensive to the patients and families. Other labels may be inappropriate because you are not qualified to provide a medical diagnosis. Do not use words like “depression,” “abusive,” “alcoholic,” or “dysfunctional.”

Remember—document the interaction you had with the patient/family, what you specifically did for them and who received your services (patient, spouse, daughter, etc.)

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Plan of Care

Your assignment, listed tasks, and visit frequency are part of the patient’s Plan of Care. As such, it must be reviewed and updated on a regular basis. Any change in the Plan of Care needs to be documented. This means that any of the following occur, the Volunteer Coordinator must be notified immediately:

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• Addition or deletions in the tasks you have been assigned to do

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• Increase or decrease in your visit frequency

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• Discontinuing seeing the patient/family

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• If it helps you at all—remember that practice makes perfect. We find that the more one actually writes up their documentation, the easier it becomes.

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Hand out a hard copy of the Volunteer Report

PROFESSIONAL RESPONSIBILITY

• Your training is almost completed. You have worked long and hard to learn about hospice, teamwork and what it takes to be a good volunteer. You have been given the tools you need to impact the lives of the terminally ill in a positive and caring manner.

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• Learning does not end when your training program is over. You are now considered a hospice professional and part of the hospice team. As with all professional, however, your learning and growing needs to continue to be the best that you can be. For this reason, we expect and strongly encourage you to make time for the following:

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PROFESSIONAL RESPONSIBILITY CONTINUED

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• Make every effort you can to attend the volunteer support and educational meetings, inservices, patient care conferences, workshops and other events that are offered to the volunteers.

• Communicate with your team about the patient/family.

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• Stay involved with the program, your patients and families and what is happening in the hospice world in general.

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• Read the information that is sent to you by the Volunteer Coordinator on hospice issues that may affect your work or the lives of your patients and families.

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• Last but not least, TALK TO YOUR VOLUNTEER COORDINATOR about your concerns, fears, issues, and feelings. He or she is considered your supervisor. Utilize their knowledge and expertise. Remember, hospice is always a team effort and no one should try to go it alone.

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You Did It!

Welcome, New Hospice Volunteer!!