Compassionate End-of-Life Care: Understanding Palliative, Hospice, and Comfort Care
When it comes to healthcare, there are certain terms and concepts that often remain misunderstood or confusing to the general public. Palliative care is one such term that, despite its importance, tends to be unclear to many individuals. Misunderstandings about the differences between palliative care and hospice care can further contribute to the confusion.
This blog post is from a conversation that I had with palliative care social worker Alison Kepple on my podcast Seeing Death Clearly. You can listen to the entire episode here.
A palliative patient holds hands with a loved one for support.
The Essence of Palliative Care
Palliative care is a specialized form of medical care that focuses on enhancing the quality of life for individuals with life-limiting illnesses. It focuses on treating the entire person by addressing physical, mental, emotional, and spiritual needs, not only for patients but also for their families. Palliative care is not limited to a specific timeframe and can be incorporated into a patient's care plan from the moment they receive a serious diagnosis.
Palliative care involves a multidisciplinary team of healthcare professionals, including physicians, nurse practitioners, social workers, chaplains, physician assistants, and volunteers including death doulas.
Understanding the Difference Between Palliative Care and Hospice Care
Although palliative care and hospice care share common goals, they differ in terms of timing and focus. Palliative care can start from the moment of diagnosis and continues throughout the illness trajectory. Palliative care is available to individuals with life-limiting illnesses at any stage of their treatment journey, not just in the final stages of life.
Palliative care is a form of medical care that doesn't limit the kind or amount of treatments a person can get. It doesn't replace other treatments like chemotherapy, radiation, or surgeries. Palliative care can be given at the same time as treatments that aim to cure or prolong life, no matter what stage of the illness a person is in.
Hospice care is specifically designed for individuals who have been determined to have six months or less left to live and have chosen to prioritize comfort care over curative treatment.
Hospice care focuses on providing comfort and support at the end of life, with a particular emphasis on symptom management and emotional and spiritual care. Hospice care does not mean that a person is dying immediately or that they will only receive care for six months. Some individuals may receive hospice care for longer periods and may even graduate from hospice if their condition stabilizes or improves.
It's important to note that palliative care and hospice care can work together and complement each other. Palliative care can transition into hospice care when a person's condition becomes terminal or when they decide to shift the focus from curative treatments to comfort care. Both palliative care and hopsice care can be done in a persons home with the nurse, social workers, and other staff members visiting the patient at home.
The Role of Palliative Social Workers
Palliative social workers play an invaluable role in providing support to patients and their families during their healthcare journey. They create a sacred and compassionate space for individuals who find themselves in a vulnerable state, bridging the gap between different worlds. Palliative social workers offer emotional support, address fears and concerns, and help patients navigate the complexities of their illness. By fostering open communication, they encourage patients to express their feelings, desires, and hopes for their end-of-life experience.
A palliative care social worker can help you have conversations with your doctor. According to palliative care social worker Alison Kepple, there are some questions you can ask when talking with your physicians.
“When communicating with physicians, it is often necessary to ask direct questions in order to obtain certain answers. For example, you may inquire about the timeframe and ask, "What time do I have?" or "How much time do I have left?" It is common for doctors to claim that such questions are impossible to answer which in most cases, this is partially true.
There are specific questions you could and should ask to get a clearer picture. For instance, you can ask, "Doc, is this condition curable or treatable?" It is important to understand that these two terms have distinct meanings. Many individuals mention receiving treatments and refer to their condition as treatable not understanding that it may not be curable.
Another essential question to ask your healthcare provider is, "Would it surprise you if I or my loved one could die from this within six months or less?" This question holds significant importance and acts as a key inquiry in palliative care discussions. It's a secret tip in the palliative care world, and it can give you valuable insight into the reality of the situation.”
Promoting Change and Seeking Palliative Care
One of the primary barriers to understanding and accessing palliative care is the lack of public knowledge and awareness. By initiating conversations about palliative care and its benefits, we can contribute to positive change in healthcare systems. Patients and their families can advocate for palliative care by discussing it with their primary healthcare providers and inquiring about the availability of palliative care teams. Seeking palliative care early in the treatment process can ensure comprehensive support throughout the illness, regardless of whether curative treatment is still ongoing.
Palliative care is a vital aspect of healthcare that focuses on improving the quality of life for individuals facing life-limiting illnesses but many people are not familiar with palliative care because it is not a widely known term. There is a need for more open conversations about death and end-of-life care to increase awareness and understanding. By embracing a different perspective on death and providing support and education, we can help individuals and their families cope with the natural process of dying in a more connected and meaningful way. It's important to have open and honest discussions with healthcare providers about prognosis, treatment options, and the goals of care to make informed decisions. By promoting open conversations about death and seeking palliative care when needed, we can embrace a more accepting and holistic approach to end-of-life experiences.
Three Journal Prompts for Self-Reflection:
Reflect on your understanding and perceptions of palliative care before reading this blog post. Has your understanding of palliative care evolved? How does this newfound knowledge impact your views on end-of-life care and the importance of comprehensive support for individuals with life-limiting illnesses?
Consider the role of open conversations about death and mortality in society. Why do you think these topics are often considered taboo? How can we promote a more accepting and open attitude towards discussing end-of-life experiences? Reflect on the benefits of embracing such conversations for individuals, families, and healthcare systems.
Imagine yourself in the role of a palliative social worker. How would you create a sacred and compassionate space for patients who are navigating life-limiting illnesses? What strategies would you employ to support individuals in expressing their feelings, addressing fears, and finding solace during such challenging times? Reflect on the importance of empathy, active listening, and fostering a sense of trust in palliative care settings.
