When Hospice Comes Up
My experience has been, quite often, that families caring for a loved one with a potentially life limiting illness, do not want to talk about Hospice Care. They don't want to hear that word. They become angry and resentful if it is brought into a conversation too abruptly or unskillfully. It's understandable; yet, in my opinion it's based on false understandings of who hospice is and what hospice care means and what hospice can provide in a family's time of need.
Knowing when the right time is to begin the conversation does not have to be left up to physicians. Family's and patients can ask about hospice services at any point. And being proactive in your own care or your loved ones care means educating yourself to all the services available so that you have a broad understanding of what is out there as needs arise in your particular situation.
Families and patients have the right, to realistically know what to expect when there is a decision being made about bringing a loved one home to die. Whether we are talking about bringing them home from a hospital stay or bringing them home from a doctors appointment, fear is usually present when the discussion begins. Fear of not knowing what to do to care for a loved one at home. Fear of not knowing how to adjust the physical environment to properly, lovingly and saferly care for someone at home. Fear of not being enough or having enough. If a person expresses that ideally they would like their dying to occur in their home, then it becomes our duty to try to make that happen. Helping families address their fears, adjust their thinking and open their hearts to accommodating what their loved one wants, is honorable work.
There are sometimes weeks and sometimes days leading up to active death that can be extremely taxing on care givers. We don't want to sugar coat the realities but we also need to reassure family members that help is usually just a phone call away if they have hospice on board.
Those of us who have worked in hospice would love to see months between admission and death not just weeks or days. But most of the time, hospice stays are much shorter than you might expect.
Barriers to providing great hospice care are multi layered. Sometimes it's a reluctance on the part of providers of medical care to have the difficult conversations about death; maybe a lack of experience or training in how to help a patient understand when it's time to focus on quality and comfort and no longer on quantity of time. From my time working in a Cancer Center I saw patients who, when the time came to shift the focus, either because treatments were no longer working or were even doing more harm than good, patients who would beg to be allowed to continue treatments because they had become so attached and comfortable with that family of caregivers; the nurses who treat their cancer, they do not want to change teams at the 11th hour.
It is my opinion there needs to be a much stronger relationship between those who lovingly provide curative, life prolonging treatments and those who lovingly provide end of life care. In other words, a much stronger alliance between treatment centers and Hospice providers.
When patients are not referred to hospice until they are actively dying, there is no time for the hospice team to develop relationship. It puts hospice at such an unfair disadvantage. Having a foundational relationship built on mutual trust is a necessary piece of providing meaningful, deep care at any point in someones life, including the end of their life. The Palliative Care movement in this country was born partly because of the very real need for people seeking treatments or surgeries for life limiting disease to have special care provided during that period of time. Ideally, hospitals, doctors and cancer centers would work with hospice teams exploring and providing symptom management, resource support, family support and grief support all the way through so that if the treatments stop working, (or never worked at all) OR the person decides the burden of treatment is too high, they don't have to let go of the providers they have come to love in order to establish care with a whole new team of strangers at the most poignant time of their life because those providers of comfort focused care, would have already been part of their support team. When a person is not referred to hospice until they are days from death, hospice becomes, at best, crises intervention hospice. It never seemed to me, an unreasonable ask, that someone from hospice be introduced onto a patients radar at the first inkling that response to treatment might be waning.
If we could find the courage to have safe conversations about what we think we’d like our death to look like long before we are making them under the duress of imminent death our loved ones would be relieved of needing to try to figure it out.
There are Death Café’s popping up all over the country. Small intimate gatherings of people who want to talk about their end of life stuff, people who want to figure out what things might be helpful to them should they have an expected death and what things might be helpful to their loved ones regardless of how death occurs. Practical things like this:
One of our nurses shared in a staff meeting that she just learned the night before that her sister hates socks and wanted everyone in the family to know that when she’s dying she doesn’t care how cold her feet feel, DO NOT PUT SOCKS on them.
We really do need to talk to one another.
I hope, as more and more people find their way onto websites like this one, or find themselves pulled into a Death Cafe by a friend, or by their own curiosity, that an interest in having these conversations will grow. For those of us passionate about End-of-Life and how we might do a better job of it in this country, we must not let the fear of a lack of interest stop us from using our voices. Sometimes I find that people are very interested in learning about and tending to someone else’s death but might not be very interested or as ready to tend to their own. Fortunately, for me and for my family, attending the deaths of so many individuals over the course of the last 2 decades, has made it impossible for me not to think clearly about my own death and how, if given the gift of seeing it coming, I'd like it to be.
That being said, even for professional care givers, an actively dying person can sometimes present challenges that tax both the body and the spirit of those caring for them. When a person has expressed their wish to be at home, being able to make that happen can be one of the most rewarding things you can do; a way to create comforting memories to carry with you for the rest of your life. And having the services of a strong, well run, hospice agency can make all the difference between feeling completely broken and blindsided by how it feels at the time of death or feeling comforted, supported, prepared and ready, at the time of death.
If you, or someone you care about, are in the position to introduce the idea of hospice care to someone, please be brave and introduce it. It is not something to put up walls to, it is a service that, when appropriate, can make such a difference in someones experience at end of life. Both the one having the experience of dying as well as those who love them who are left behind.
I hope this was helpful. If it was, and if you'd like to see them continue, there is now a new link on the website where you can buy me a cup of coffee!
This is Sean Jeung and I hope you'll join me again Where the Veil Grows Thin....