Caring for Patients & Caregivers Facing Uncertainty
Tami Borneman, RN, MSN, CNS, FPCN
Clinical Research & Editing Consultation
https://consultation-editingservices.squarespace.com/
Objectives�
Blindsided by Life�
“In those few moments of realization, your focus changes from the everyday, ordinary issues of life, to the traumatic, catastrophic occurrences that make everything else seem miniscule. Your focus has been changed from the mundane to the monumental. Your feelings have escalated from bland to ballistic in a heartbeat. And while your heart is pounding, you hold your breath, and realization begins to sink into your consciousness. You’ve been blindsided and nothing will ever be the same again.” (Wright, 2018)
Why This Topic?
“He’s in denial!”
“She just can’t accept it!”
“If he could just accept his diagnosis even a little bit, then we could get him the help he needs”
“If she just understood that her husband has widespread metastatic lung cancer and putting him through more chemotherapy is not going to help him, we could get the poor guy on hospice”
Not that these aren’t legitimate concerns,
BUT, what IF it isn’t about getting them to do Anything?
What IF….
Case
Happily married, C and her husband, L, owned a ranch with horses which they loved. They had no children.
C was 73 y/o when diagnosed with advanced lung cancer with mets to the bone and brain. Several years prior,
she had undergone a heart transplant so this news was devastating to her and her husband. C was informed that the cancer was incurable but that receiving palliative therapy could prolong her life and provide the best quality of life possible.
The familiar feelings of uncertainty began along with disbelief. The heart transplant had given her a second chance at life and now this. She shared that this was like a black hole full of questions but offering no answers, at least no acceptable ones.
Case cont.
Treatment options were discussed and initiated. She learned to control side effects from chemo and started to feel a bit more normal again. She began to feel she might yet ‘beat this thing’. C enjoyed almost a year of stable disease before a CT scan revealed progressive disease. This news was again devastating to her and L. The oncologist presented treatment options but she first needed whole brain radiation for the enlarged brain mets. C and L asked questions about success rates for chemo and radiation, and how long the treatments would work. C shared that facing the uncertainty of treatment working or not working made her feel vulnerable. The uncertainty was also difficult for her husband.
C and L spent many hours on the internet looking at survival stats, treatments, and nutrition. When it was time
Case cont.
to start treatment, she was reminded that the overall goal was a longer quality of life, not cure. C did well with treatment and CT scans showed stable disease. She began to feel hopeful again and she and L started making travel plans. When asked about her positive outlook, she stated that being otherwise was self-defeating. Consequently, she started focusing her enery into hoping for a cure. She put cancer out of her mind and expected improvement at every clinic appointment. C believed God would provide healing but didn’t live in a faith bubble. She was ‘not walking in a Pollyanna path without looking at reality’ and stated that ‘denial gives me hope’.
Unfortunately, 2 months later C became progressively short of breath, necessitating several thoracenteses and
Case cont.
ultimately ending up on oxygen. She also experienced excruciating multifactorial pain and was placed on an IV infustion pump in addition to oral pain meds. Over the next month, she became oxygen dependent, needed assistance from L to use the bathroom, and was admitted to the hospital 3 times for pain control.
Aware of her rapid decline, she reluctantly consented to hospice but still maintained hope for a treatment to prolong her life. C held on to that hope until she died 1 month later.
Quality of Life
Physical Well Being & Symptoms
Functional Ability
Strength/Fatigue
Sleep & Rest
Nausea
Appetite
Constipation
Social Well Being
Caregiver Burden
Roles and Relationships
Affection / Sexual Function
Appearance
Psychological Well Being
Anxiety
Depression
Enjoyment / Leisure
Pain Distress
Happiness
Fear
Cognition / Attention
Spiritual Well Being
Suffering
Meaning of Pain
Religiosity
Transcendence
QOL
Ferrell BR. (1996). The quality of lives: 1,525 voices of cancer. Oncology Nursing Forum, 23(6): 907-916.
Importance in Assessing Spirituality in Addressing Uncertainty
Importance in Assessing Spirituality in Addressing Uncertainty
National Consensus Conference – February 2009, 40 interdisciplinary national leaders.
Definition of Spirituality
“Spirituality is the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.”
Importance of Assessing Spirituality in Addressing Uncertainty
Spirituality Research at City of Hope: Patient (1989-present)
FACIT-SP-12 (Pt, FCG) COH QOL Spiritual Subscale (FCG)
1. | I feel peaceful |
2. | I have a reason for living |
3. | My life has been productive |
4. | I have trouble feeling peace of mind |
5. | I feel a sense of purpose in my life |
6. | I am able to reach down deep into myself for comfort |
7. | I feel a sense of harmony within myself |
8. | My life lacks meaning and purpose |
9. | I find comfort in my faith or spiritual beliefs 10. |
10. | I find strength in my faith or spiritual beliefs |
11. | My illness has strengthened my faith or spiritual beliefs |
12. | I know that whatever happens with my illness, things will be okay |
| Scale 0 = not at all – 4 = very much |
| Spiritual Well Being Subscale |
1. | Is the amount of support you receive from religious activities such as going to church or temple sufficient to meet your needs? |
2. | Is the amount of support you receive from personal spiritual activities such as prayer or meditation sufficient to meet your needs? |
3. | How much uncertainty do you feel about your family member's future? |
4. | Has your family member's illness made positive changes in your life? |
5. | Do you have a purpose/mission for your life or a reason for being alive? |
6. | How hopeful do you feel? |
7. | Rate your overall spiritual well being |
| Scale 0 to 10 with varied anchors & some items transposed |
Importance in Assessing Spirituality in Addressing Uncertainty
Spirituality Research at City of Hope: Family Caregiver (1989-present)
Importance in Assessing Spirituality in Addressing Uncertainty
Spirituality Research at City of Hope: Combined (1989-present) Key Findings
Literature on Uncertainty
Lead Author | Design | Sample | Results |
Living with uncertainty and the reality of death (Quinn 2020) | Qualitative | N=15 cancer patients | Language used: ‘life shattering’, ‘deflated’ Fear of relapse Reality of death Use of metaphors: ‘abyss’, ‘shutting the door’ |
Hope dies last… (Baalen 2016) | Qualitative | N=76 cancer patients receiving palliative care | Roles of hope: gives meaning, provides resilience, motivates, provides energy Sources of hope: MD reports, treatment, prior experiences, social comparisons Nature of hope: subjective, based in reality |
Nothing is wrong, Doctor… Rabinowitz (2006) | Literature review used in response to MD questions about denial | NA | Denial: adaptive or maladaptive Differential diagnosis: Avoidance, Disavowal, Denial Suppression as mature coping |
The pervasive nature of uncertainty… Shilling (2017) | Qualitative | 24 Pt/CG dyads (24 pts, 23 cg), various cancers | Pts &/or CGs dealt with uncertainty in planning for the future, providing for the family, employment, finances, recurrence, family life, retirement, loss of hopes and dreams, and sense of life put on hold |
Literature on Uncertainty cont.
Lead Author | Design | Sample | Results |
Uncertainty in illness in family caregivers… Arias-Rojas (2019) | Descriptive correlational | 300 family caregivers (FCG) of hospitalized patients with various chronic noncommunicable diseases | Positive association between FCG level of uncertainty and patient’s health status and symptoms, length of time as caregiver, and perceived support from healthcare professionals, family and religion |
Non-Research Author | Title | | Summary Comments |
Brady (2012) | Intractable denial | | Author addresses the question, ‘Is denial a problem that needs fixing?’ It is not something to save the patient from, rather, ‘the barrier is there for a reason.’ |
Borneman (2014) | Death awareness, feelings of uncertainty, and hope in advanced lung cancer patients: can they coexist? | Case report | Uncertainty and hope can coexist. Certainty does not need to be real: it just needs to feel real to the patient. Neither does certainty have to be logical or make sense to anyone else for it to feel real to the patient. |
Key Issues for Patients and/or Family Caregivers Experiencing Uncertainty
Denial viewed as being unrealistic
Unrealistic → not coping
Key Issues for Healthcare Professionals Regarding Patient and/or Family Caregiver Uncertainty
Healthcare Professional Interventions: Self
Self-awareness
Interventions: Patient & Family Caregiver
Interventions: Patient & Family Caregiver
Presence “transcends role obligations and acknowledges the vulnerable humanness of all…to be present means to unconceal, to be aware of tone of voice, eye contact, affect, and body language, to be in tune with the patient’s message.” (Byock, 1994)
Interventions: Family Caregivers Specifically
Excuses for not taking care of themselves
I provide the best care
Feelings of guilt
Patient fear
Too exhausted
Things they CAN do
Take a nap
Ask someone to come for an hour to be with the patient to provide respite, allowing the
caregiver to do something “normal”.
Interventions: Family Caregivers Specifically
Legacy Films | Share Your Story, Impart Your Wisdom
StoryCorps - Stories from people of all backgrounds and beliefs
Memories Live | Share Your Memories and Wisdom to Leave A Legacy.
Anticipatory Grief (AG)
Conclusions
References
Arias-Rojas, M., Carreño-Moreno, S., & Posada-López, C. (2019). Uncertainty in illness in family caregivers of palliative care patients and associated factors. Revista Latino-Americana de Enfermagem, 27, e3200.
Azhar, S., Herrmann-Johns, A., Wolff, D., Rechenmacher, M., Kaiser, U., & Wasner, M. (2025). " I can't do it anymore": a qualitative study on the emergence of crisis in outpatient palliative care-the perspective of family caregivers. BMC Palliative Care, 24(1), 39. https://doi.org/10.1186/s12904-025-01664-y
Borneman, T., & Brown-Saltzman, K. (2019). Meaning in Illness. In B. R. Ferrell & J. A. Paice (Eds.), Oxford Textbook of Palliative Nursing (5th ed., pp. 456-466). Oxford University Press.
Borneman, T., Irish, T., Sidhu, R., Koczywas, M., & Cristea, M. (2014). Death awareness, feelings of uncertainty, and hope in advanced lung cancer patients: can they coexist? International Journal of Palliative Nursing, 20(6), 271-277. https://doi.org/10.12968/ijpn.2014.20.6.271
Brady, A. (2012). Intractable denial. Oncology, 43-44e. www.oncologynurseadvisor.com
Bush, N. J., & Gorman, L. M. (2018). Psychosocial Nursing Care Along the Cancer Continuum. Oncology Nursing Society.
Byock, I. (1994). When suffering persists. J Pall Care, 10(2), 8-13.
References
Coelho, A., & Barbosa, A. (2017). Family Anticipatory Grief: An Integrative Literature Review. American Journal of Hospice and Palliative Medicine®, 34(8), 774-785. https://doi.org/10.1177/1049909116647960
Coelho, A., de Brito, M., Teixeira, P., Frade, P., Barros, L., & Barbosa, A. (2020). Family Caregivers' Anticipatory Grief: A Conceptual Framework for Understanding Its Multiple Challenges. Qualitative Health Research, 30(5), 693-703. https://doi.org/10.1177/1049732319873330
Ferrell, B., Borneman, T., Koczywas, M., & Galchutt, P. (2024). Spirituality in Patients With Cancer: A Synthesis of a Program of Research. Psycho-Oncology, 33(12), e70033. https://doi.org/10.1002/pon.70033
Ferrell, B. R., Borneman, T., Koczywas, M., & Galchutt, P. (2024). Research Synthesis Related to Oncology Family Caregiver Spirituality in Palliative Care. Journal of Palliative Medicine. https://doi.org/10.1089/jpm.2024.0209
Kearney, M. (1996). Mortally Wounded. Simon and Schuster.
Kuhl, D. (2009). What dying people want. In H. Chochinov & W. Breitbart (Eds.), Handbook of Psychiatry in Palliative Medicine (2nd ed., pp. 141-156). Oxford University Press.
Majid, U., & Akande, A. (2022). Managing anticipatory grief in family and partners: A systematic review and qualitative meta-synthesis. The Family Journal, 30(2), 242-249.
References
Mount, B. M., Boston, P. H., & Cohen, S. R. (2007). Healing connections: on moving from suffering to a sense of well-being. Journal of Pain and Symptom Management, 33(4), 372-388.
Nierop-van Baalen, C., Grypdonck, M., van Hecke, A., & Verhaeghe, S. (2016). Hope dies last ... A qualitative study into the meaning of hope for people with cancer in the palliative phase. Eur J Cancer Care (Engl), 25(4), 570-579. https://doi.org/10.1111/ecc.12500
O'Brien, M. E. (2006). The Nurse with an Alabaster Jar. NFC Press.
O'Brien, M. E. (2011). Spirituality in Nursing (4th ed.). Jones & Bartlett Learning.
Pepito, J. A. T., Babate, F. J. G., & Dator, W. L. T. (2023). The nurses' touch: An irreplaceable component of caring. Nursing Open, 10(9), 5838-5842. https://doi.org/https://doi.org/10.1002/nop2.1860
Puchalski, C., & Ferrell, B. (2010). Making healthcare whole. Templeton Press.
Quinn, B. (2020). Living with uncertainty and the reality of death. International Journal of Palliative Nursing, 26(6), 278-283.
Rabinowitz, T., & Peirson, R. (2006). “Nothing is wrong, doctor”: understanding and managing denial in patients with cancer. Cancer investigation, 24(1), 68-76.
References
Rosa, W., & Ferrell, B. (2023). The Nature of Suffering and the Goals of Nursing (2nd ed.). Oxford University Press. https://doi.org/10.1093/oso/9780197667934.001.0001
Sherman, D. W. (2019). A review of the complex role of family caregivers as health team members and second-order patients. Healthcare,
Shilling, V., Starkings, R., Jenkins, V., & Fallowfield, L. (2017). The pervasive nature of uncertainty—a qualitative study of patients with advanced cancer and their informal caregivers. Journal of Cancer Survivorship, 11, 590-603.
Stephenson, P. (2004). Understanding denial. Number 5/2004, 31(5), 985-988.
Wright, H. N. (2018). When it Feels Like the Sky is Falling. Harvest House Publishers, p 14.
Younas, A., Rasheed, S. P., Sundus, A., & Inayat, S. (2020). Nurses' perspectives of self‐awareness in nursing practice: A descriptive qualitative study. Nursing & Health Sciences, 22(2), 398-405.