Palliative Care Is Not (Necessarily) the End

Palliative care is specialized medical care that focuses on providing relief for symptoms of serious illnesses, with a specific focus on pain relief. These services are meant to enhance a patient’s current care and treatment by focusing on improving the quality of life for them and their family while also helping the patient manage their symptoms.¹

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In palliative care, a patient does not have to give up treatment that might cure a serious illness, as palliative care can be provided along with treatment and may begin at the time of diagnosis. Further, the availability of palliative care does not depend on the curability of a condition, and it can be provided in hospitals, nursing homes, outpatient palliative care clinics, or at a patient’s home.^2,3 The goal of palliative care is to improve the quality of life for people with a serious illness; decrease depression and anxiety; increase patient and family satisfaction with care; and, in some cases, extend survival.³

Who Can Benefit From Palliative Care?

Palliative care is a resource for anyone living with a serious illness, such as cancer, heart disease, lung disease, stroke, and blood and bone marrow disorders requiring stem cell transplant.¹ Additionally, palliative care is not solely focused on end-of-life care, as it can be helpful at any stage of illness. In fact, it is best provided soon after a person receives a diagnosis of a life-threatening illness.

Further, palliative care may be covered by Medicare, Medicaid, Veterans Affairs, or private insurance.³ Symptoms that may be improved by palliative care include pain, nausea or vomiting, anxiety or nervousness, depression or sadness, constipation, difficulty breathing, loss of appetite, fatigue, and trouble sleeping.¹

The Palliative Care Team

A palliative care team is made up of multiple professionals who work with the patient, family, and the patient’s other doctors to provide medical, social, emotional, and practical support. This team can include palliative care specialist doctors and nurses as well as social workers, nutritionists, and chaplains. Additionally, a person’s team may vary based on their needs and level of care.

Palliative care teams are focused on providing patients with serious illnesses a greater level of comfort and improved quality of life. The team works with the patient, their family, and other providers to add an extra layer of support and relief that complements the patient’s ongoing care and treatment.²

Palliative Care Plan

The palliative care plan is designed to fit a patient’s individual life and needs. This plan may include the following: symptom management, support and advice, stress management, financial concerns, spiritual concerns, care techniques, referrals, and advance care planning.²

Over time, if the doctor or the palliative care team believes ongoing treatment is no longer helping, there are 2 possibilities. The first option is that palliative care can transition to hospice care if the doctor believes the person is likely to die within 6 months. The second option is that the palliative care team can continue to help with increasing emphasis on comfort care.²

Barriers to Palliative Care

Although there have been significant advances in understanding the benefits of providing patients with palliative care early on, many patients with serious illnesses who qualify either do not receive any palliative care services or receive these services in the last phase of their illness.⁴ For patients with advanced cancer, early palliative care has been found to improve patients’ quality of life and is recommended as standard care.⁵

One barrier to early referrals is that patients may associate palliative care with the eventuality of death and bring with that association feelings of hopelessness and fears that their cancer treatment may even cease as a result of pursuing palliative care.⁵ Even when health care professionals attempt to explain the benefits of early palliative care, this negative association may be difficult to overcome.⁴

Currently, there is significant evidence showing that receipt of palliative care is better for patients with serious illness in all respects than no access to palliative care; further, the evidence has also shown that early access improved quality of life sooner for these patients. Data from multiple studies of palliative care programs have also shown that these services can improve patient health outcomes and symptom control, as well as caregiver outcomes by reducing stress and dysfunctional grief.⁴ Further, these study findings have demonstrated there is often a cost neutrality to providing these services, with data showing substantial cost avoidance when patients are transferred from acute care settings to patients’ preferred locations, such as at home or in residential hospice.⁴

Recommendations

One recommendation for health care professionals is to avoid using the term palliative as a euphemism for dying. Notably, hospice care is the part of palliative care that focuses on providing end-of-life care, and the term hospice is recommended to be used with specific intent with this meaning in mind.⁴

With treatment for a life-threatening diagnosis, many patients who enter the limbo of survivorship would benefit from palliative care services, as these specialists have the skills to contribute significantly to care for these patients. Use of the visual bow tie model in the Figure^4,6 below, which emphasizes the inclusion of survivorship as a possible outcome, can support this understanding of how palliative care can meet patient needs outside of end-of-life care.

Figure: The Bow Tie Model of 21st-century palliative care.

The basic skills involved for a palliative approach to care are recommended to be introduced into the training of all health care professionals, including oncology pharmacists, involved with caring for patients who have life-threatening illnesses. For this purpose, trained palliative care specialists are valuable for these efforts to support teaching and mentoring on the language and tools that are beneficial to implement into care and communication with these patients.⁴

With consistent messaging, a substantial shift toward supporting a palliative approach to care for patients with life-threatening illnesses can benefit the way health care is delivered for these patients.⁴ This type of care focuses on the patient as a person facing a unique challenge in their life, and services that acknowledge and support this awareness have been shown to only benefit patient qualify of life and health outcomes.

References

1. Palliative care. Mayo Clinic. June 6, 2023. Accessed August 11, 2023. https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637

2. Palliative care in cancer. National Cancer Institute. November 1, 2021. Accessed August 11, 2023. https://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet

3. What are palliative care and hospice care? National Institute on Aging. May 14, 2021. Accessed August 11, 2023. https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care

4. Hawley P. Barriers to access to palliative care. Palliat Care. 2017;10:1178224216688887. doi:10.1177/1178224216688887

5. Zimmermann C, Mathews J. Palliative care is the umbrella, not the rain—a metaphor to guide conversations in advanced cancer. JAMA Oncol. 2022;8(5):681-682. doi:10.1001/jamaoncol.2021.8210

6. Hawley PH. The bow tie model of 21st century palliative care. J Pain Symptom Manage. 2014;47(1):e2-e5. doi:10.1016/j.jpainsymman.2013.10.009

About the Author

Douglas Braun, PharmD, RPh, CPH, CSP, is the senior pharmacy director at the American Oncology Network, LLC, in Fort Myers, Florida.