Volume 24, Number 11: November 2023

The illness experience has a profound impact on family caregivers' psychological and physical health. Part 1 of this article described the wider definition of "family," how to understand the situation and needs of caregivers, concrete ways to improve the flow of information, and how to bolster caregivers' confidence. It also touches on what to be aware of when a family caregiver translates for the medical team.

Comfort My Father, and You Comfort Me: The critical role of family caregivers [Part 2 of 2]

By Barry R. Ashpole
IAHPC board member & communications consultant

There are far-reaching repercussions if the family caregiver ignores or downplays their own health and general well-being. This can impact negatively on the quality of patient care. And there is the potential for harmful effects on their other relationships. 

Advice for the family caregiver

Photo by Sayeda Quadir, Bangladesh, India, submitted to the IAHPC 2021 Photo Contest. Used with permission.

With this in mind, advice for the family caregiver should include the following.

1. Routine visits to their physician, and telling the physician that they are a caregiver. 
2.  Be aware of signs of anxiety, depression, fatigue, or stress. 
3. Admit when feeling overwhelmed (everyone benefits from a break in routine—a “mental health day”). 
4. Do not expect—or try—to do it all.
5. Do not be afraid or reluctant to ask for help, and be specific about the nature of the help needed. 
6. Involve family or friends in planning daily or weekly tasks.
7. Rate the importance of daily tasks.
8. Consider making slight changes in habits or routine activities to ease the sense of burden or stress.
9. Let go of things that simply add to their workload.
10. Change expectations about household tasks. 
11. Take control of the situation before it becomes a crisis. 
12. Trust their instincts: instincts usually lead in the right direction.

What is paramount is focusing on the patient, not their illness.

The caregiver’s personal support network should be explored, keeping in mind that family dynamics and geographic proximity are key considerations. Health care professionals can boost preparedness in key areas: promote family integration into care, recognize families’ specific information needs, and implement strategies to ensure these are met.⁴ 

The potential for conflict

Conflict between a patient and their caregiver can result from a lack of awareness of—and communication about—the patient's preferences for care, and the caregiver's preferences in supplying it.⁵ When illness advances and death is impending, open dialogue about future care, including advance care planning, can foster consensus.

Photo by Maria Witjaksono of Jakarta, Indonesia, submitted to the IAHPC 2021 Photo Contest. Used with permission.

When the caregiver has a full-time job there is real potential for conflict between demands at home and those in the workplace. Problems can easily spill over from one to the other. For many, the strain of being “on call” 24 hours a day, seven days a week, is compounded by the threat of either income or job loss if they have full or part-time employment outside the home. Income protection and employment security for family caregivers, therefore, is integral in the provision of quality care for the seriously ill who choose to remain at home. In Canada, the Ontario Palliative Care Association initiated a long-term strategy that helped raise the profile of the family caregiver nationally, which ultimately led to paid leave for family caregivers.⁶

If relevant, encourage family caregivers to talk to their employer about their situation and ways to handle new demands. Possibilities include more flexible hours, flex time (the same hours, divided differently), working from home, unpaid leave of absence, etc.

Pain medication

Assessing and managing patients’ pain is a common source of anxiety among family caregivers, especially those in rural communities who face special challenges that include distance and limited access. Family caregivers frequently express discomfort administering pain medications, fearing under- or over-medicating patients. Concerns about opioid misuse is an issue that can be addressed in a frank discussion. 

They struggle to assess the level of pain and worry about medications' side effects, such as confusion, sedation, and constipation. Many report challenges communicating with health care providers about pain.⁷ Research underscores the need to improve the training and support for family caregivers in pain and symptom management.

When death is imminent

Informing families about the impending or actual death of their relatives is one of the most challenging and complex tasks that hospice personnel and palliative care providers may face. The task consists of five roles and goals.

1. The first and basic role is to inform the family as early as possible. 
2. The second goal is to convey to the family that their relative received the needed care. 
3. The third goal is to help the family reach acceptance of the death, moving beyond feelings of anger and how things could have been done differently (called bargaining), part of the seven stages of grief.
4. The fourth goal during encounters with families, and family caregivers in particular, is to reduce or alleviate guilt by stating that nothing could have changed the course of the disease and that all efforts were made in the care of the patient. 
5. The fifth role is to try and help the family maintain unity during this stressful situation.⁸

Following death

The family caregiver (and the family as a whole) does not only experience grief following death. Pre-death grief comprises anticipatory grief and illness-related grief. Anticipatory grief is characterized by separation distress and worry about a future without their loved one. Illness-related grief is characterized by grief over current and ongoing losses experienced during the illness trajectory.⁹

A family caregiver who has been present through long-term illness is still going to mourn their loved one's death. Their grief may be different from those who face sudden death, but the loss is still real. To diminish the caregiver's experience is to diminish both their effort and the life of the loved one who has died. 

Resources

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Recommended Readings

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References

4. Ongko E, Philip J, Zomerdijk N. Perspectives in Preparedness of Family Caregivers of Patients with Cancer Providing End-of-Life Care in the Home: A narrative review of qualitative studies. Palliative & Supportive Care. Published online July 27, 2023. 

5. Mulcahy Symmons S, Ryan K, Aoun SM, et al. Decision-Making in Palliative Care: Patient and Family Caregiver Concordance and Discordance: A systematic review and narrative synthesis. BMJ Supportive & Palliative Care. Published online March 22, 2022. 

6. Ontario Palliative Care Association newsletter. "Throne Speech Spotlights Family Caregivers." Winter 2002/2003; Vol. III, No. 3: pp. 1, 2.

7. Starr LT, Washington KT, Cagle JG, et al. Pain Management Education for Rural Hospice Family Caregivers: A pilot study with embedded implementation evaluation. American Journal of Hospice & Palliative Medicine. Published online July 25, 2023. 

8. Flugelman MY. How To Talk with the Family of a Dying Patient: Anger to understanding, rage to compassion, loss to acceptance. BMJ Supportive & Palliative Care 2021; 11: 418-421. 

9. Singer J, Roberts KE, McLean E, et al. An Examination and Proposed Definitions of Family Members’ Grief Prior to the Death of Individuals with a Life-Limiting Illness: A systematic review. Palliative Medicine 2022; 36(4): 581-608.

Read Barry’s bio.

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