End-of-Life: Family Support for the Patient

Posted on May 16, 2023

Those of us who have been at the bedside, attempting to support dying patients and their families through the end-of-life experience, understand that these final days can and should be comfortable with gentle and supportive care and the opportunity to have meaningful conversations on the way to goodbye.

End-of-Life: Family Support for the Patient

In an article written for Hospice News, when it comes to end-of-life care quality, the United States ranks 43rd among 81 countries, according to a study. For the purposes of this study, researchers defined “end-of-life care” as any health care services received by terminally ill patients in their final days, including but not limited to hospice.[i]

End-of-life refers to the final stages of a person's life when facing a terminal illness or irreversible condition that ultimately leads to death. The specific definition of end-of-life can vary depending on the individual circumstances. Still, generally, it refers to the period when the person is receiving palliative or hospice care and is no longer pursuing curative treatment options.

In the medical context, end-of-life is often defined as the last few weeks or months of a person's life. There is also a broader – as in the specific timeline is uncertain - definition of when a person faces a chronic or progressive illness that will eventually lead to death, even if the specific timeline is uncertain.

Either way, and in theory, end-of-life is focused on providing comfort and support to patients and their families. It can include a range of medical, emotional, and spiritual interventions to help improve their quality of life by managing symptoms to help patients live as comfortably and peacefully as possible during their final days. Families are also supported through this time of grief and loss.

End-of-Life Care Quality Not as Expected

Unfortunately, and according to Parker, a recent study originating from the Lein Centre for Palliative Care at the Duke-National University of Singapore Medical School revealed, “. . . dying patients often express regret about the treatment they received, particularly high cost, high-acuity services that are of little benefit at that stage of their illness. The families of these patients are also left with medical debt that can lead to bankruptcy,”,[ii] particularly in developed countries.

In the United States, many of the identified problems focused on duration rather than quality of life, providing services that are not in agreement with patient wishes, goals, and inattention to nonmedical concerns. Healthcare providers or the healthcare system focus on the patient’s medical needs instead of the patient's emotional, social, psychological, and spiritual needs. In other words, counter to those that hospice care is specifically designed to prevent.

A practice verified by another study in the JAMA Network Open evaluating the incidence of aggressive end-of-life care among older adults with metastatic cancer.[iii] The study revealed that many patients received aggressive treatment during their last final days. Twenty-five percent of these individuals underwent surgery, radiation, and/or chemotherapy.

Patients who receive aggressive care experience tend to experience more pain, poorer quality of life, and tend to die sooner. A good number of those who wished to die at home died in hospitals. Truly an unpleasant and unnecessary experience.

Those of us who have been at the bedside, attempting to support dying patients and their families through the end-of-life experience, understand that these final days can and should be comfortable with gentle and supportive care and the opportunity to have meaningful conversations on the way to goodbye.

Even more reason to have a plan in place so that families can run interference should they find themselves placed in a seemingly impossible situation of inattention to nonmedical concerns.

Here are a few suggestions for family members:

1. Open Communication: Families can provide valuable insight into the patient’s nonmedical concerns, preferences, and needs. Encourage open and honest communication between family members and healthcare providers. Actively communicate, sharing information about their social, emotional, and spiritual well-being

2. Active Involvement: Actively participate in care planning and decision-making. Collaborate with healthcare providers to make sure that nonmedical concerns are considered and addressed.

3. Advocate for Comprehensive Care: Advocate for comprehensive care that goes beyond medical treatment. As needed, express the importance of addressing the patient's nonmedical concerns and encourage healthcare providers to consider the patient’s overall well-being. Emphasize the impact that nonmedical factors have on the patient's quality of life and advocate for the integration of supportive services.

4. Seek Supportive Resources: Proactively seek out supportive resources within the healthcare system or community to address nonmedical concerns. This may involve reaching out to social workers, chaplains, or mental health professionals who can provide additional support and services.

5. Provide Emotional Support: Provide emotional support during your loved one’s healthcare journey. By being present, listening attentively, and offering empathy, families can help alleviate emotional distress and improve the patient’s overall well-being.

6. Continuity of Care: Ensure continuity of care by actively participating in care transitions and coordinating information between different healthcare settings. You can help ensure that nonmedical concerns are effectively communicated to all involved healthcare providers, ensuring a holistic approach to the patient's care.

7. Education and Empowerment: Educate yourself about the importance of addressing nonmedical concerns and becoming advocates for your loved one’s comprehensive care. By being knowledgeable about available resources and the patient’s rights, families can empower themselves to actively engage in discussions and decision-making processes.

By actively supporting efforts to address nonmedical concerns, families contribute to the patient’s overall well-being and help to create a healthcare environment that considers the comprehensive needs of the patient.

[i] Parker, Jim, Hospice News, January 26, 2022. bit.ly/41BAcwM.
[ii] Ibid.
[iii] Koroukian, Douglas, Long, et al. Incidence of Aggressive End-of-Life Care Among Older Adults with Metastatic Cancer Living in Nursing Homes and Community Settings. 02/22/23. https://bit.ly/42XbDM2.