Is Palliative Care a Death Sentence?
Even if you’ve heard the terms hospice and palliative care before, studies show that you’re probably wrong about what they are. Considering the universality of serious illness, it’s surprising how few of us are familiar with our options. It’s not our fault, though; we live in a society that shies away from these topics, so we’ve probably never been briefed on what to do if we’re seriously ill or when the end is nigh. So, what are hospice and palliative care (spoiler: they’re not the same thing), and when and how do we ask for them?
How Are Hospice and Palliative Care Different?
There’s an expression that hospice is about living, not about dying. Sure, at its core, it’s a program for patients with serious illness who have a prognosis of 6 months or fewer. However, hospice aims to help patients live their lives to the fullest while they still have time. With a focus on symptom management and comfort, hospice uses an interdisciplinary team to provide emotional, spiritual, and logistical support to help enrich this final chapter of life. However, hospice isn’t just for its patients—it’s also for their families. During this time, family members can receive support services, and later, they’re typically offered bereavement services. While dying is usually a point of discussion in hospice, it’s regarded as a normal process, and instead, the focus is on living. Because of this, where a patient wants to live is highly respected. Though some patients elect to reside in a hospice facility, others prefer to receive hospice care elsewhere, such as in a nursing home or, most commonly, in the comfort of their own homes. Regardless of where a patient wants to spend this chapter, the end-of-life phase can be challenging for patients and their families, so a hospice program makes this part of life just a little more livable.
Palliative care is a different story. Like hospice, palliative care focuses on support, quality of life, and symptom management for patients and their families through an interdisciplinary team, and can be provided in a variety of settings. However, unlike hospice, palliative care is not end-of-life care (despite what 74% of people with misconceptions about it thought). Instead, it is an extra layer of support that’s intended for use across all stages of a serious illness and is based on need, not prognosis. In fact, many patients continue undergoing curative treatments while in palliative care in the hope of improvement or remission. Illnesses and intensive treatments can often be physically and emotionally demanding, so palliative care seeks to relieve suffering and make the experience as comfortable as possible. With palliative care, patients leave when their symptoms or condition improve enough to deem it no longer necessary. However, if a serious illness progresses far enough, hospice may be recommended as a next step.
How to Know If You Need Hospice or Palliative Care
Being sick is incredibly hard; it can be painful, stressful, and exhausting. If you’re facing side effects, stress, or emotional challenges from serious illness, then it may be worth considering palliative care. Whether you’re actively pursuing curative medical treatment or not, you can benefit from it if you want the support of a team of specialists who work from a patient-centered and compassionate framework and strive to help you manage your symptoms as much as possible. In simpler terms, palliative care is a way to make the awful experience of being sick a little less awful. It also reduces the burden on caregivers—one of the most overlooked and underappreciated roles when it comes to serious illness. Some caregivers require additional support, especially when their loved ones need a level of care that exceeds what they can reasonably be expected to or are able to provide. Additionally, some studies show that engaging in these services early in the course of serious illness can save money, increase quality of life, decrease depression, and even prolong the life of patients. On the other hand, if you want all those palliative care benefits but have been given a prognosis of 6 months or fewer and your goal is comfort instead of a cure, then hospice may be right for you.
When and How to Ask for Palliative Care and Hospice
Medical professionals don’t often shy away from recommending hospice if it’s appropriate for a patient. However, if you feel like hospice makes sense for you and it hasn’t already been discussed, it’s worth asking your medical team about it. Although palliative care is increasingly recommended, your healthcare provider may not suggest it, even if it is appropriate for you. While hospice is commonly known, palliative care is so often mistaken for end-of-life or elder care, and its benefits are so overlooked, that it may be left out of the conversation entirely. Despite being a growing field, 56.8 million people globally would benefit from a palliative care program each year, but only 14% of that population receives it, according to the World Health Organization. Besides making a remarkable difference with symptom management and quality of life, bringing palliative care up to your medical team displays a sense of self-advocacy and a true understanding of serious illness care. When speaking with your healthcare provider about palliative care, consider asking what treatments may be added and whether you can retain your current medical team throughout the program.
Common Misconceptions
When it comes to hospice and palliative care, there's no shortage of myths and fallacies. First and foremost, hospice and palliative care aren’t the same thing. Hospice isn’t a place to get euthanized—it’s end-of-life care, not life-ending care. It does not necessarily imply that death is moments away, as it is possible to have a long-term stay in hospice (as former President Jimmy Carter famously did) or even get discharged should your prognosis change. Palliative care isn’t a death sentence, and it’s not even end-of-life care at all; choosing it doesn’t even mean you have to stop receiving curative treatments. Palliative care isn’t just for older adults, and hospice won’t disregard your religious and cultural values. Neither program will force patients out of their homes, nor will they overlook patients’ families. These programs are so often misunderstood that people who could benefit from them don’t always get the chance to do so. The more hospice and palliative care become part of the conversation, the more informed we can be about our options, empowering us to decide not how we want to die, but how we want to live.
Written by:
Lauren Mazlin, LMSW, LSW, is a psychotherapist and Licensed Social Worker in New York and New Jersey. She holds a certification in Palliative Care & Gerontology and is trained in Meaning-Centered Grief Therapy, with experience working in oncology and with older adults. Lauren is currently a full-time psychotherapist at Nurturing Life Counseling, LLC in Hoboken, New Jersey.
