General Medical · Health

Hospice Care: A Primer for Patients and Their Caregivers

Q. “Turning the corner”: What do family members need to know about the signs of oncoming death?

The dying process is the opposite of what we’re used to seeing in life. My metaphor has long been, “It’s as if you’re walking down the street and you’re heading for the corner. Things look familiar till the patient gets to the corner, and then he turns, and it’s a whole different street. It’s easy to get surprised even though you were heading in that direction all along.

One of the jobs of the hospice worker is to normalize the dying process for the caregiver. And that’s really tough—not only because, as the joke goes, we Americans think dying is optional, but also because so many people die in hospitals that these days, the signs of oncoming death are a secret known only to doctors and nurses. And then, people only know the medicalized version of death, leading to a lot of expectations from the medical system to “fix it.” As a population we have separated ourselves from many natural processes (birth, death, menstruation), so witnessing someone go through the process of dying and the changes leading up to the actual moment of death is unprecedented for most people.

BKB-GoneFromMySight_0Each person is so unique in the way he untangles from this life. Still, there are a few things that are sort of common. Most people continue to eat less and less. Most people sleep more and more. So I use this technique with caregivers—to be very, very calm and to acknowledge that I’m seeing what they’re seeing. “Yes, he’s not eating; yes, he’s sleeping a lot; yes, he’s not really responding” Because it looks wrong to us . . . he should be talking, he should be more awake.

It’s good for caregivers to recognize these signs. We like to give out the booklet Gone From My Sight, The Dying Experience. a simple little book. It mentions signposts that may be noticed at various times—in the last month of life, the last three weeks of life . . . I don’t like to put numbers on things, because people can move through the end stages of life pretty quickly or slowly, but it helps people, I have found, to get an idea that the sleeping and the not eating is to be expected.

Q. Have dying patients ever given you clues as to what they’re going through?

Though I have been a hospice nurse for all these years, of course I will never know what is truly happing for the dying until it is my turn to be the patient on the bed. In all these years I have had real feedback on what it “feels like” to die from only one patient—an elderly gentleman I visited when I first started my nursing work in hospice. At one of my visits with him he mentioned, “My daughter tells me that I am sleeping all the time,then he added, But its not like any sleep I’ve ever had before.”

Weeks later, to my astonishment, he gave me another unexpected lesson His daughter asked me to visit because her father was restless. (End-stage restlessness is what some people go through; some patients want to get out of bed, some declare they want return books to the library.) The old gentleman appeared to be conducting a symphony in the bed with his eyes closed. As I leaned over him, he opened his eyes, looked straight at me, and said to me, “You know, it’s not so easy to die.”

What we in hospice attempt to do, through our repeated visits and contacting of family, is to help them understand what is happening, and what to do to keep the patient comfortable and to cope with this big transition, because when the actual dying is happening it can be an amazing but overwhelming experience to be part of. We can never really prepare for this significant event.

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  • Delores Lyon May 26, 2015 at 4:28 pm

    Thanks for sharing your experience with hospice care! I had no idea that hospice workers don’t actually do the bulk of patient care. That means it is really important for family members to hire a good caretaker for their loved one. In fact, this makes me want to start making a savings fund just in case something like this happens to me.

  • Janet Restino May 19, 2015 at 8:24 pm

    Dear Kim
    What a journey you have been on! From knowing you in the 80’s doing off off off off Broadway theater in East Village basements to your present calling – happy to hear you are so dedicated as a hospice nurse and helping people cross over.
    Keep up the good good work you are doing.

    Dear Deborah
    Many thanks for interviewing Kim here – and bringing her insights to us.

  • Kim Hone May 17, 2015 at 9:47 am

    It’s great to read these comments and I am glad this interview offered some insight into hospice care in the US. We are so reluctant to discuss the subjects of death and debility in our culture (remember the ‘death panel’ fiasco? – sparked because the new health care law would have mandated and paid for physicians’ to address patients’ wishes about resuscitation and extraordinary measures).
    To commenter Ms. Clark whose father died alone in the hospital, I am sorry you were not able to get more support from your hospice. It is our practice to help families maintain as much of the direct care services they already have when they enroll in hospice, and SW/RN will work very hard to help families figure out a plan based on various options. It isn’t so much that hospice services are so limited but rather the myths about hospice skew expectations, hopes and fears. I agree whole-heartedly that the gap in our medical coverage overlooks the importance of direct care workers on quality of life and continuity of care. As a society we also de-value it by not supporting good pay and benefits for the people who do the difficult and messy hands-on work of bathing, feeding and caring for our most vulnerable.
    Thank you for your interview Deborah and adding to our collective knowledge!

  • Corky Pollan April 27, 2015 at 10:43 am

    This is a much needed article. It’s so thorough and answers all the questions one has when needing a hospice care giver. A friend just went through the hospice experience for her husband, and having this guide would have been such a help to her. Many thanks.

  • Carolyn Clark April 26, 2015 at 12:39 am

    The lack of coverage for hands-on care in hospice is not a good thing. I am disabled and could not provide much physical care for my father in his final illness. Although I realized he was dying, choosing hospice care meant going from 12 hours of home health care a day to, for all intents and purposes, none. I couldn’t do it, and he ended up dying in a hospital, alone. Insurance companies should be happy to pay the relatively low cost of home care workers. Home hospice care is now a sort of bait-and-switch, where the patient’s emotional and spiritual needs are considered, but the 24-hour per day work of changing diapers is ignored. Instead, along with emotional support, families should receive the physical support they need, covered by health insurance!

  • Susanna Gaertner April 24, 2015 at 11:18 pm

    Thank you for this thorough and enlightening article which I will print and keep in a special file. Like Toni, I hope to have this sort of care in my final days.
    Even if I had a family, I would prefer this intimate yet non-intrusive, non-judgmental, comfortingly non-personal attention from trained, supportive professionals.

  • Toni Myers April 23, 2015 at 11:08 pm

    Thank you so much for this needed and useful article on the work of a hospice team leader. I have experienced hospice support three times for people I’ve loved. What is difficult is the loss and the day to day intimate chores the living must do with as much tenderness and care as we can muster. Hospice support may not do these things (as outlined in the article), but providers listen and offer sound advice to caregivers, bring in volunteers to read aloud if the patient desires, interpret and gently mediate if needed. In one situation the hospice nurse advised the small care place that certain things were ok, carefully siding with family in what had become a dispute. In another, the nurse let us know that our loved one was now in process of moving on and our chatter was impeding her journey…well it’s all personal; I learned so much. I’ve told people close to me that I very much want hospice for myself. Being closely involved with a dying person you care for can be exhausting and challenging as well as heartbreaking, but it’s a great honor. Hospice helps make it so.

  • Margery Stein April 23, 2015 at 3:36 pm

    This is a difficult topic, but the article is very thorough & interesting, even educational. Kudos to Debbie for a great job.

  • Patricia Yarberry Allen, M.D. April 23, 2015 at 2:39 pm

    This is such a wonderful guide for our readers and others who will find this post at 2 am when they feel overwhelmed and without guidance.
    Dr. Pat

  • Paul Harkins April 23, 2015 at 10:37 am

    Thank you for this wonderfully written and important article.

    I can personally thank the home nurse who probably saved my life after my heart operation when she rushed me to the hospital as my heart was beating wildly.

    We can see this same life ending process as our beloved house cats slowly die, with the same stages and similar emotional stress.

    Very powerful