There’s no doubt, the mention of hospice brings up ideas for people that often they’d rather avoid. Whether it’s memories of loved ones who have been on hospice, the stories we hear on the street, or the things we’ve seen in movies, hospice often recalls the notion that this person is leaving our world imminently. I felt this sensation about a month ago. A family member was being admitted to hospice, and my adrenaline surged as I wondered how quickly she could be gone, how I could help, and if I’d get one last chance to see her.
I should mention that I’m a hospice nurse. I know that patients can be in hospice for many weeks or even months. I’ve cared for the patients who have been in hospice for years. Such thoughts, especially from someone who works in hospice, expose how deeply our preconceived notions about hospice are ingrained.
I’d like to challenge our cultural view on the brevity of hospice. It is not a touch on third base as the patient rounds the corner to home plate. Although this does happen, and we provide meaningful care for those patients too, hospice is best experienced as the honeymoon location where you settle in, explore, get comfortable, and then go home. So, let’s ponder some reasons why hospice care is often delayed, and then we can look at the benefits that are in store for those who sign onto care sooner than later.
We don’t need outsiders; we can manage on our own.
If your doctor is talking to you about hospice, it means they’re coming to a point where your care is progressing past their circle of expertise, and they’d feel best knowing someone who is well-versed in the end-of-life process is taking care of your needs. Palliative care is the umbrella term over hospice, and it is its own specialty for good reasons. But this is just where hospice begins. Medical care is good, but holistic care is the coveted jewel that every area of healthcare aspires to provide. Hospice thrives on the holistic, interdisciplinary model. Physician, nurse, social worker, chaplain, nurse aid, and volunteers become a seamless team that helps you and your family discover your goals, your comfort, and your needs so that you can navigate this transition with what feels valuable to you. Yes, you could manage on your own, but when facing advancing illness, new symptoms, emotional turmoil, and questions about what needs to be done after the patient has passed, I’d much rather the family have a team of experts who can help to navigate these ever-changing waters.
It feels like we’re giving up if we transition to hospice.
The philosophy behind hospice is simply to not prolong life; nor hasten death. The focus is on the quality of life for however long that life remains with us. Culturally, we are driven towards technology, innovation, and fixing. So it’s no surprise that the idea of removing those things feels like “giving up.” As much as we’d like to believe we will live forever, the truth is that each one of us will come to the point of needing to allow the natural process of life to run its course. This point will be different for each of us, and a question you might ask yourself is, “what would a good death look like for me?” If it’s fighting to the last minute in a hospital setting, you have the freedom to choose that. If it’s being surrounded by family in your home, you have the freedom to choose that. This question can help give clarity to how you want the end of life to look, should you be given the choice.
I also want to ask you what it would mean to give up? Wouldn’t that be pushing away all medical care, stopping all medications, and reverting back to the way life was before illness became such a large part of the journey? Hospice is not that. We continue the medications that add value to life, whether it’s
related to the diagnosis or not. Nurses visit regularly to assess and evaluate what is needed; social work helps with navigating the emotional and resource needs; and chaplains bring spiritual support in whatever form is valuable to you. Knowing this, it’s less about giving up and more about taking the next step. Transition is a challenging thing for most people, and transitioning out of curative care is a major decision — one that we often see people pause over and feel reservations about. How can you know if it’s time to take the next step? If focusing on the things that bring meaning to you sounds good, if finding interventions that help minimize pain sounds nice, if spending time with the people you love most sounds important, then it’s time to consider taking the next step.
We don’t know the current prognosis.
In a culture where technology, treatment, and curing disease are the focus, it’s easy to make this the center of your attention, rather than the whole picture. Many physicians struggle to bring up the topic of prognosis or have their own experiences with death that prevent them from initiating good conversations with their patients about the bigger picture. This care team that has been providing care for you is your team, and sometimes the patient is the one who needs to ask about prognosis. It is always your right to ask and understand whether things are improving or if treatments are no longer helping. Combining this with discussions about your goals and what feels important for you right now can yield very healthy discussions with your team of clinicians. Often, patients will feel this shift in their body or know the point when their body is feeling frail and increasingly weak. There are specific criteria to be eligible for hospice, so it is not possible to enter hospice too soon. The systems that are in place will prevent hospice admission if the prognosis is not likely to be six months, or less. If this is the case, TRU also provides palliative care, which is designed to provide support for as long as the patient would like to receive it. Palliative care is for those who have a chronic illness that is not yet terminal. When that illness has progressed enough to be deemed terminal, then hospice can begin. Regardless of where you are in the spectrum of illness, there are resources to support you and your family.
What are the benefits?
There’s clinical and research data to support early hospice admission, and then there’s what I’ll call tribal knowledge — things we in hospice have known to be true without research telling us so. Let’s start with clinical research. A study which is frequently referred to on this topic shows early palliative care resulted in longer median survival, and improved quality of life over standard care. In addition, those who received standard care exhibited more depressive symptoms than those who were in palliative care1. This study had a generous sample size of 151 patients who all had the same primary diagnosis of malignant non-small cell lung cancer. While not everyone will have this disease in the community setting, it does allow for a fair comparison of symptoms and expected disease progression within the study.
Another study looked at frequency of unscheduled encounters with emergency care among patients with end stage lung cancer. These participants were not enrolled in hospice and 68% of them required emergency help near the end of life. Most frequently, pain was the cause for seeking care. Of those who got emergent care, 20% required hospitalization, often because of shortness of breath.2 Had these patients been enrolled in a hospice program, they could have remained at home with supportive care to manage symptoms outside of the hospital. Lung cancer is one of the most common malignancies and often has a profound impact on quality of life. This is why studies often focus on this diagnosis, but it also serves as a good benchmark for other malignancies and diseases of the heart and lungs, which are very prevalent in our society. I’d encourage you to read this study for yourself to see the case studies highlighted.
There are many medical studies and reasons for palliative care, but I’d like to also highlight the research on psycho-social aspects of hospice. Chaplains and social workers are often overlooked when considering hospice care professionals. Perhaps these supportive roles are considered optional, and indeed, visiting with either discipline is not required. You may be surprised to know that they too help ease suffering. Dr. Daniel Siegel is a well-known professor of psychiatry and has spent much of his career highlighting the power of neuroplasticity.3 His research suggests that compassion can create new neural patterns, new neural receptors, and improved overall well-being. By developing therapeutic relationships with a chaplain or social worker, patients and families effectively ease suffering. We know that psychological suffering exacerbates physical pain, so this ease of suffering is both physical and existential.
Finally, let’s look at the tribal knowledge — things that have been proven true to our clinicians over time. In describing the impact of long-term hospice care, TRU Chaplain Janie Blakely, says, “the core of longer length of stay, from my perspective of offering emotional and spiritual support in the home, is that it enables the care relationship to emerge as primary again. It reveals that we are not just a medical service agency providing nursing care and external resources to the dying, but that we are a holistic care team compassionately accompanying patients and loved ones at end-of-life so that each day may be the best day it can be. This sense of journey comes through a relationship of trust, caring, mutuality, and connection that is greatly strengthened by time to build a rapport and nurture trust. We in hospice know that pain ameliorated in one pain center positively correlates to comfort for other pain centers. So, the deeper the relational connection and trust, the deeper the compassion and comfort is felt.” This beautifully captures the power of the interdisciplinary team. Where one discipline brings relief, all the other disciplines benefit. Most importantly, where one team member brings comfort to a patient, there is a snowball effect building comfort, relief, and peace for the family unit in our care.
We have tinkered with many topics in this article, and much more could be said. We have considered the common reasons why families feel they don’t need hospice, we’ve looked at research, and we’ve considered the power of therapeutic relationships. My desire is for you to see a new perspective on palliative care. From physical comfort to spiritual well-being, as the hospice team working with a patient gets to know the dynamics at play, they can tailor the experience to what exactly is needed. When illness becomes terminal there is every reason to explore hospice sooner than later.
The dying process involves a type of labor for the family, but especially for the patient. There is a specialty of care, and a need for new information and teaching for the whole family. Hospice creates a space for the one who is leaving this world to have closure, have symptoms managed, and have quality days with their family. This is what the hospice team loves and why they chose this specialty — the ability for a patient and family to truly live and create the last memories with all the support they need.
1. Temel, J. S., Greer, J. A., Muzikansky, A., Gallagher, E. R., Admane, S., & Jackson, V. A. (2010, August 19). Early palliative care for patients with metastatic non–small-cell lung … The New England Journal of Medicine. https://www.nejm.org/doi/full/10.1056/NEJMoa1000678
2. Borneman, T., & Koczywas, M. (2023). Palliative care in the New Era of lung cancer treatment. Journal of Hospice & Palliative Nursing, 25(3). https://doi.org/10.1097/njh.0000000000000945
3. Siegel, D. J., & Drulis, C. (2023, February 3). An interpersonal neurobiology perspective on the mind and Mental Health: Personal, public, and planetary well-being. Annals of general psychiatry. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9897608/