Toolkit of�Last Phase Palliative Care
2023/2024
Scope of Services
Design Committee composition
MDT composition
ID | Name | Job title / Specialty | Facility |
1 | Dr. ABDUALAZIZ ALSIF | lead/Family Medicine | PHC |
2 | ASMA ALHARBI | deputy/Nursing specialist | KFSH |
3 | RABAIH ALFRHIDIY | Project manger | MOC |
4 | Dr. YASSER ALORINI | facilitator/Home Care Medicine | BGH |
5 | MOHAMMED AL HDIB | provider/physiotherapy | KSH |
6 | WALEED AL GRWAN | provider/Social worker | KFSH |
7 | Dr. SHEBEL MOSTAFIA | provider/Pain management specialist | MCH |
8 | NOWAF ALHARBI | provider/Pharmacist | BGH |
9 | | | |
10 | | | |
The guideline
Name of the guideline
Rational for selection
Other relevant statistics
The statistics
PALLIATIVE PATIENT SEGMENTATION
Frailty in the Elderly with multiple progressive comorbidities
End Stage Cancer Disease with refractory symptoms
End Stage Cardiac Disease with refractory symptoms
End Stage Renal Disease where dialysis support is not feasible or being withdrawn
Progressive Neurodegenerative Disorders(e.g. Motor Neuron Disease, Multiple Sclerosis)
HIV / AIDS not responding to anti‐retroviral therapy or rapidly deteriorating due to overwhelming disease‐related complications (infections or malignancy)
Life Threatening Pediatric Conditions including life threatening congenital disorders
Severe Chronic Airway Limitation with deteriorating respiratory function and poor candidate for ventilator support
International Best Practices
ID | Name of the pathway | Country | Date |
1 | Clinical Practice Guidelines for Quality Palliative Care, 4th Edition | USA | 2018 |
2 | Understanding Palliative Care | Australia | 2019 |
3 | Saudi Palliative Care National Clinical Guidelines for Oncology | KSA | 2019 |
4 | | | |
5 | | | |
6 | | | |
7 | | | |
8 | | | |
9 | | | |
10 | | | |
Current Pathway
2º care
Community
1º care
Awareness
Diagnosis
Care plan development
Treatment
Acute episode
Continuing care1
3º or 4º care
1. Continuing care includes Home Care, Rehab, Palliation as relevant for the pathway
Source: Eastern Hub Team
Assess p.t as general diagnosis
Examine by oncology doctor
decision
admission on hospital (word) as general care by treating doctor
yes
NO
Discharge and refer to
Home care for caring general
The Future State Pathway
2º care
Community
Diagnosis
Care plan development
Treatment
3º or 4º care
Continuing care1
1. Pathway that focuses on improving the quality of life of patients and their families facing life-threatening illness, through the prevention and relief of suffering by means of early identification, targeted care planning and treatment of pain in its physical, psychosocial and spiritual forms. (WHO Definition of Palliative Care. (2020). Retrieved April 5, 2020, from https://www.who.int/cancer/palliative/definition/en/
Existing or new palliative patient experiencing an advanced, life-limiting illness with no cure
Verification & certificating of death
Imminent death care, counselling and bereavement for the family
Hospice
Existing palliative patient experiencing an advanced, life- limiting illness with no cure
Care provided to the patient in the hospital by the palliative care unit or clinic
Care provided to the patient in a hospice setting
Patient and/or family meets with the multidiscipline nary Last Phase Team (LFT) to discuss patients’ needs and preference (DNR, AND, organ donation to SCOT, preferred place of care, etc.).
Care provided to the patient & his family if he/she prefers to stay at home
Home with telemedicine and helpline support
Hospital
Start point
Start point
Start point
LFT conducts and finalizes the patient’s care plan (including place of care, existing and required medication, and access out of hours care) through shared decision making, while taking into account the patients’ needs & preferences
Place of care
Change place of care
Pain management & continuous review of needs and preferences (place of death, resuscitation, and organ donation)
Pain management & continuous review of needs and preferences (place of death, resuscitation, and organ donation)
No, remain in community / home setting
Yes, transportation and handover to another team
No, remain in hospital setting
Verification & certificating of death
End of point
KPIs
Target | Denominator | Nominator | indicator | KPI Type |
More than 90% | Total number of patients consulted on the transfer of care | Number of patients that agreed to be transferred to the palliative care unit after MDT family | Percentage of patients & families who agree to move to the palliative care unit following multidisciplinary team (MDT) meeting | Structure |
More than 75% of p.t who need palliative care | Total number of patients within the palliative care unit | Number of patients that agreed to be transferred to community care | Percentage of patients & families that accept the referral from hospital to community care | Pathway compliance |
100% p.t | p.t with Pain score less than 3 | total number of p.t palliative | Pain score in Palliative p.t | |
60% of total cases referred to home care | Number of caregiver education | total number of p.t palliative home care visit/ | percentage of home visit and patient and family education in home care | Outcome |
90% of total cases consoling | Consoling / death number | total number of p.t palliative | Number of consoling and bereavement for each patient died |
The Key Improvement Areas Needed To Build Future State
Services and skills
Care plan
The Key Improvement Areas Needed To Build Future State
Training
Enablers
PLAN- DO- CHECK- ACT PDCA
- Choose which part of the pathway to monitor (review care plan development and treatment)
- List indicators/KPIs and at which interval they will be followed (monthly, or
sometimes shorter or longer intervals)
- to visualize data Table
- Make necessary changes to the pathway
new PDCA cycle
Act
Plan
Do
Check
Essential manpower, training and qualification with core competencies
Discipline | Brief Job Description | Training location | Period of training
| Essential Education/ Certificate of training | Certification body | Experience | Remarks |
Physician MD Palliative Care Associate Consultant/ Consultant | -To exercise the highest possible standard of patient care in the specialty of palliative care according to his/her clinical privileges and available resources. -Participate in the training and teaching program of the hospital/ community related to the specialty.
| -Recognized KSA Program -And/ Or Recognized North American/ UK training | -6 years+ Internship -Minimum 3-4 Years -Minimum 2 Years | -MBBS Degree from a recognized medical school. -Saudi Board, Arab Board or equivalent higher qualification in Medicine or Family & Community Medicine. -Fellowship in Palliative Care (Minimum of two years) | -Ministry of Education/ recognized Medical School Program in a university -Certifying Board of Recognized Program -SCFHS | -2-4 years Specialized professional training/experience in Palliative Care in a recognized center post qualification in Medicine or F&CM | -Level 1 English language skills. -Arabic Speaker is preferred -Proficient computer literacy.
|
Physician MD Palliative Care Assistant Consultant
| -To exercise the highest possible standard of patient care in the specialty of palliative care according to his/her clinical privileges and available resources. -Participate in the training and teaching program of the hospital/ community related to the specialty.
| -Recognized KSA Program -And/ Or Recognized North American/ UK training | -6 years+ Internship -Minimum 3-4 Years
| -MBBS Degree from a recognized medical school. -Saudi Board, Arab Board or equivalent higher qualification in Medicine or Family & Community Medicine.
| -Ministry of Education/ recognized Medical School Program in a university -Certifying Board of Recognized Program nationally or internationally -SCFHS | -At least 0-1 year experience post internal medicine, family medicine or medical oncology board certified. | -Level 1 English language skills. -Arabic Speaker is preferred -Proficient computer literacy.
|
Essential manpower, training and qualification with core competencies
Discipline | Brief Job Description | Training location | Period of training
| Essential Education/ Certificate of training | Certification body | Experience | Remarks |
Advanced Nurse Practitioner/ Nurse Practitioner/ Physician Assistant | -Practices at an advanced level, providing autonomous and collaborative -expert palliative care nursing for patients with a life limiting illness. -The NP role includes assessment and management of clients using nursing knowledge and skills and may include but is not limited to, the direct referral of patients to other health care professionals, prescribing medications and ordering diagnostic investigations. -To exercise the highest possible standard of patient care in the specialty of palliative care according to his/her clinical privileges and available resources. -Participate in the training and teaching program of the hospital/ community related to the specialty. | -Recognized KSA Program
And/ Or -Recognized North American/ UK training | Undergraduate: -4 years + 1 year internship -Postgraduate:2 years Master degree -One year | -Bachelor Degree in Nursing Science BSN -Master Degree in Advanced Nursing Practice -Preferred fellowship training in palliative care) | Ministry of Education/ recognized Nursing School Program in a university -Certifying Board of Recognized NP Program nationally or internationally -SCFHS | -5+ years nursing experience required -At least 1 year experience post graduate | Level 1 English language skills. -Arabic Speaker is preferred -Proficient computer literacy. |
Palliative Care Nurse Coordinator | Assesses patients’ physical, psychological, social, and spiritual needs of patients with incurable diseases -Responsible for Patient Care Coordination. -Facilitates development, implementation, coordination and evaluation of patient's interdisciplinary care plan. -Collaborates with inter and multidisciplinary teams to ensure best quality care delivery and provides specialized care required | Recognized KSA Program
And/ Or -Recognized North American/ UK training | Undergraduate: 4 years + 1 year internship -Minimum 6-12 months certificate program or 2 years master program
| Bachelor Degree in Nursing Science BSN from Recognized Program -Formal training/ certification from recognized program in Palliative care Nursing or Master degree in Palliative care | Ministry of Education/ recognized Nursing School Program in University -Recognized Nursing Certifying Body for PC if applicable -SCFHS | 5 years, as least 3 out of 5 years in the Oncology and Palliative Care. | Level 1 English language skills. -Arabic Speaker is preferred -Proficient computer literacy. |
Essential manpower, training and qualification with core competencies
Discipline | Brief Job Description | Training location | Period of training
| Essential Education/ Certificate of training | Certification body | Experience | Remarks |
Palliative Care Nurse | -Provides specialized care for patients with advanced, incurable diseases, on a direct or consultative basis, assessing their needs, and support needs of their families, makes recommendation for their management using a holistic approach through utilizing interdisciplinary team. | Recognized KSA Program
And/ Or -Recognized North American/ UK training | Undergraduate: 4 years + 1 year internship -3-6 Month certificate Program | Bachelor Degree in Nursing Science BSN -Palliative care Nursing certificate/ training | Ministry of Education/ recognized Nursing School Program in University -Recognized Nursing Certifying Body for PC if applicable -SCFHS | Minimum 3 years recent nursing experience. -Minimum 1 year palliative care \ hospice \ oncology experience (preferred). | . Level 1 English language skills. -Arabic Speaker is preferred -Proficient computer literacy. |
Registered Nurse Acute Setting | -Provides care for patients with advanced, incurable diseases, on a direct or consultative basis, assessing their needs, and support needs of their families in acute care setting | -Recognized KSA Program
And/ Or -Recognized North American/ UK training | Undergraduate: 4 years + 1 year internship -3-5 days course in
| Bachelor Degree in Nursing Science BSN -Education short term training in Palliative care | Ministry of Education/ recognized Nursing School Program in University -SCFHS | Minimum 2 years recent nursing experience. | Level 1 English language skills. -Arabic Speaker is preferred -Proficient computer literacy |
Home Health Care Nurse | Provides care for patients with advanced, incurable diseases, on a direct or consultative basis, assessing their needs, and support needs of their families in home healthcare setting. | Recognized KSA Program And/ Or -Recognized North American/ UK training | Undergraduate: 4 years + 1 year internship -6-12 Months HHC certificate program or -4-6 weeks certificate Program in PC | Bachelor Degree in Nursing Science BSN -Formal training/ certification in home Healthcare from recognized program -Formal certificate/ short term training in Palliative care | Ministry of Education/ recognized Nursing School Program in University -Recognized Nursing Certifying Body for PC or HHC if applicable -SCFHS | Minimum 2 years recent nursing experience. -Minimum 1 year home healthcare experience | Level 1 English language skills. -Arabic Speaker is preferred -Proficient computer literacy. |
Essential manpower, training and qualification with core competencies
Discipline | Brief Job Description | Training location | Period of training
| Essential Education/ Certificate of training | Certification body | Experience | Remarks |
Social Worker | -Provides critical psycho-social support to palliative care patients through the palliative care services consult team. -Uses their professional background and skills to assist the team and facilitate patient family meetings and assists team, attending physicians, staff, and patient and family in the clarification of the goals of care and the plan of care. -Coordinates team efforts with appropriate hospital support departments to ensure smooth discharge planning and clear follow-up post discharge; may assist in the development of creative community or system care options for patients. -Serves as a liaison with the hospital hospice and other community hospices, home health, and nursing homes to ensure care coordination and appropriate assignments and resource allocation to meet patient needs throughout the continuum of care. | Recognized KSA Program
And/ Or -Recognized North American/ UK training | Undergraduate: 4 years - 4-6 weeks certificate Program | Bachelor Degree in Social Sciences/ Social Work
-Formal Education short term training/ certificate in Palliative care for social worker | Ministry of Education/ recognized Social work/ social sciences Program in University -SCFH | -Minimum 2 years recent social worker experience. -Minimum 1 year oncology/ palliative care experience | Level 1 English language skills. -Arabic Speaker is preferred -Proficient computer literacy. |
Essential manpower, training and qualification with core competencies
Discipline | Brief Job Description | Training location | Period of training
| Essential Education/ Certificate of training | Certification body | Experience | Remarks |
Clinical Pharmacist | To exercise the highest possible standard of patient care in the specialty of palliative care according to his/her clinical privileges and available resources. -Participates in the training and teaching program of the hospital/ community related to the specialty. -To ensure the safe, appropriate and cost effective provision of medicines and professional advice in line with current legislation and local and national policies. -Manages and improve the medication-use process in patient care settings -Demonstrates excellence in the provision of medication counseling to patients, caregivers, and families - Ensures safe and legal disposal of medication and medication supply chain management. | -Recognized KSA Program
And/ Or -Recognized American/ UK training | 5 years+ Internship -2 Years general board + 1 year specialized training | Bachelor degree for pharmacy/or pharm D -Saudi board or PGY1(post graduate year1) -PGY2( 2years training which include oncology or medicine which include palliative care) or specialty Saudi certificate(1 year training after 1 year PGY1) | Ministry of Education/ recognized pharmacy School Program in a university -Certifying Board of Recognized Program -SCFHS | -2-4 years’ experience as clinical pharmacist (one year in oncology) or Immediately after certificate as senior clinical pharmacist | Level 1 English language skills. -Arabic Speaker is preferred -Proficient computer literacy. |
Medical Spiritual Advisor/ provider/ Counselor | -Provides emotional and spiritual counseling to palliative and hospice patients, families, and bereaved. -Provides spiritual care of the dying and their families and facilitates available contacts within the local religious community, if requested by patients and/or families, -Provides and supports bereavement services | Recognized KSA Program or recognized international certificate | -4 years -2-4 weeks training in palliative care and spiritual care | Bachelor’s Degree in Religious Studies/ theology or a related topic.
-Formal Education short term training/ certificate in Palliative care for spiritual counselor | Ministry of Education/ recognized Program in a university
-SCFHS | 2 years’ experience as Spiritual counselor -At least 1 year experience/ training in healthcare settings/ hospitals | Level 1 English language skills. -Arabic Speaker is preferred -Proficient computer literacy. |
Essential manpower, training and qualification with core competencies
Discipline | Brief Job Description | Training location | Period of training
| Essential Education/ Certificate of training | Certification body | Experience | Remarks |
Dietician | Is responsible for medical nutrition therapy of patients. -Performs clinical nutrition care functions of screening, assessment, nutrition intervention, patient education and documentation of care in accordance with physicians order and in collaboration with food services department and nursing unit. | Recognized KSA Program
And/ Or -Recognized American/ UK Program | 4 years + 1 year internship 2-4 weeks training in palliative care | Bachelor degree in clinical nutrition -Formal Education short term training/ certificate in Palliative care Nutrition | Ministry of Education/ recognized Clinical Nutrition Program in a university
-SCFHS | -Minimum 3 year experience as dietician at least one year in oncology | Level 1 English language skills. -Arabic Speaker is preferred -Proficient computer literacy. |
Physiotherapist | Provides an expert and skilled therapy service to palliative care patients. -Contributes to the multi-disciplinary team -Screens rehabilitation referrals and undertake holistic, specialist assessments of patients and develop dynamic treatment plans. -Implements and delivers excellent treatment to the patients focusing on maximizing function and engagement with their lives. | Recognized KSA Program
And/ Or -Recognized American/ UK Program | -4 years+1 year internship
2-4 weeks training in palliative care | Bachelor degree from recognized college of applied science -Formal Education short term training/ certificate in Palliative care | Ministry of Education/ recognized Physiotherapy Program in a university -SCFHS | 3years experience as general physiotherapist at least one year in oncology | Level 1 English language skills. -Arabic Speaker is preferred -Proficient computer literacy. |
Essential manpower, training and qualification with core competencies
Discipline | Brief Job Description | Training location | Period of training
| Essential Education/ Certificate of training | Certification body | Experience | Remarks |
Occupational Therapist | Provides an expert and skilled therapy service to palliative care patients. -Contributes to the multi-disciplinary team -Improves quality of life as defined by each patient and optimizing his or her functional abilities are integral to the philosophy and practice of occupational therapy. -Identifies current and potential abilities, and determine barriers to engaging in occupations including activities of daily living, instrumental ADLs, rest and sleep, leisure, and social participation. | Recognized KSA Program
And/ Or Recognized American/ UK Program | 4 years+1 year internship
2-4 weeks training in palliative care | Bachelor degree in OT from recognized college of applied science
-Formal Education short term training/ certificate in Palliative care | Ministry of Education/ recognized Occupational therapy Program University -SCFHS | 3 year experience as general occupational therapist at least one year in oncology | Level 1 English language skills. -Arabic Speaker is preferred -Proficient computer literacy |
Respiratory Therapist | Respiratory therapist can look after and follow a person who is having breathing problems, advise and teach on the use of oxygen, suctioning and medications to help with breathing so that the quality of life might be enhanced. | Recognized KSA Program
And/ Or Recognized American/ UK Program | 4 years+1 year internship
2-4 weeks training in palliative care | Bachelor degree in RT from recognized college of applied science -Formal Education short term training/ certificate in Palliative care | Ministry of Education/ recognized Respiratory Therapy Program in a university -SCFHS | 3 year experience as general respiratory therapist, at least one year in oncology | Level 1 English language skills. -Arabic Speaker is preferred -Proficient computer literacy. |
Essential manpower, training and qualification with core competencies
Discipline | Brief Job Description | Training location | Period of training
| Essential Education/ Certificate of training | Certification body | Experience | Remarks |
Counselor | Uses counseling methods to help people manage and overcome mental and emotional issues. -Listens to patients, developing treatment plans, and creating coping strategies | -Recognized KSA Program
And/ Or Recognized American/ UK training | 4 years
2-4 weeks training in palliative care | -Bachelor degree in a behavioral, social science, or psychology field. -Formal Education short term training/ certificate in Palliative care | -Ministry of Education/ recognized Respiratory Therapy Program in a university -SCFHS
| 3 year experience as a counselor, at least one year in oncology | -Level 1 English language skills. -Arabic Speaker is preferred -Proficient computer literacy. |
Volunteer | Responsible and willing to serve others in a volunteer capacity and able to work within an interdisciplinary team. -Supports the hospice concept and sensitive to the social, emotional, spiritual and medical complexities of the dying patient. -Able to relate to people from varying races, cultures, religions and backgrounds without bias or prejudice. | Recognized KSA Program | 2-4 weeks training in palliative care | High school or equivalent -Formal Education short term training in Palliative care | -MOH volunteer training program -Healthcare care institution
| 2 years’ experience as volunteer -At least 1 year experience/ training in healthcare settings/ hospitals | Level 1 English language skills. -Arabic Speaker is preferred -Proficient computer literacy.
|
Competencies requirements �
Competency Focus | Description of Competency |
Pain and Symptom Management | Appropriately manages patient’s pain and other distressing physical symptoms of disease, illness or treatment in a timely manner and achieves outcomes acceptable to the patient/family. Management may include referral to appropriate specialist and/or acceptance and support of the patient’s decision to include complementary therapies in treatment. |
Emotional | Supports patient and family expression of emotional needs. Listens actively, supports as appropriate, and refers to support groups, professionals with expertise in this area. May use open-ended questions such as “How are you doing? How are things going in your life? What, if anything, are you feeling anxious about?” |
Psychosocial | Provides an environment to support patient and family expression of psychosocial needs. Listens actively, supports as appropriate, and refers to support groups, other professionals with expertise in this area. Integrates this area with each interaction. May use open-ended questions such as “How are you doing? How are things going in your life? How have things changed for you in your life? “ |
Spiritual/ Cultural | Manages interactions to support patient and family expression of spiritual needs, strengths and cultural practices. Creates environment that allows integration of dialogue about spiritual issues within care experience. Refers to spiritual care staff and community resources as congruent with patient/family values. Communicates cultural care preferences of patients/families to others. May use questions such as “What is the meaning of this illness to you and for your life? How has your sense of time changed? What strength have you called upon as you go through this illness?” |
Relationship – Family and Community | Addresses desires and needs for support from family and friends. Determines if there has been a change in family communication. Facilitates family communication of specific issues by structure of interactions. Provides anticipatory guidance for family as they focus on their relationships. This may include reconciliation of relationships. Provides helpful tools and/or refers for assistance with family communication. May use questions such as “How have things been within your family? Are there things you would like to say to your family or things you would like them to know? Friend? Colleague? How much change has occurred with your social relationships outside the family?” |
Honoring Patient Care Wishes | Understands and communicates patient and family wishes prior to crises or impending death. Honors wishes as care goals change. Carries out interventions that make a difference for patient comfort and/or recovery. Supports patient and family when they refuse treatment. Provides welcoming environment for family to stay with patient. |
Competencies requirements �
Competency Focus | Description of competency |
Dying and Death | Identifies those who are approaching last days of life. Communicates honestly to patient/family about approaching death and helps make the most of the last days. Determines patient/family wishes regarding place of death and seeks to have death occur where desired. Assists family to give patient permission to die, to say good-bye and to bring reconciliation to family relationships. |
After Death | Prepares family for events that occur immediately following death, i.e. select funeral home, make funeral arrangements, notify agencies such as SRS, Medicare, attorney who handles estate, financial issues, canceling appointments etc. Hints: This could be presented to the family in a packet of information. |
Bereavement | Manages interactions with the bereaved that support communication of clinical concerns and questions as appropriate. Actively initiates referrals for support during bereavement. |
Relationship | Establishes rapport with patient and family. Is viewed as “present, really listening, caring and trustworthy.” Initiates contact with bereaved family as appropriate to relationship (e.g., call to family to express condolences). |
Communication | Is available physically and mentally for patient and family communication. Delivers difficult information in honest, clear manner. Maintains hope by focusing on palliative care when cure or life prolongation is no longer possible. Focuses on helping patient/family live in way meaningful to them. |
Teaching | Assesses for patient and family knowledge and questions. Refers to appropriate resources for additional information and support. Provides anticipatory guidance about illness, treatments, possible outcomes and health system issues. |
Team Collaboration | Provides care with a team approach that includes patient and family as integral and essential members of the care team. |
Adapted from: Crosswalk of JCAHO Standards and Palliative Care – with PC Policies, Procedures and Assessment Tools. Center to Advance Palliative Care CAPC (2014) Sutton Group.
To Measure the Success Outcome
Patient Enrollment
Workforce Satisfaction
Integration of care
Patient Engagement
Health Outcomes
The guideline
GUIDELINE of ESAS
The guideline
The guideline
The guideline
The guideline
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