General Medical · Health

Hospice Care: A Primer for Patients and Their Caregivers

1535619818_57b05d743a_zImage from Flick via Pink Sherbet Photography (Creative Commons License)

kimberly hone

Kimberly Hone

Kimberly Hone has been a hospice nurse for 13 years—a profession that “in some ways,” she said, “chose me.” Working with dying patients and their families is, she reflected, “my niche . . . my passion. It has taught me a lot about myself and life in general.”

Who better to provide a look from the inside on how hospice works? Kimberly, now a hospice team manager for the Visiting Nurse Service of New York (VNSNY), is well positioned to answer Women’s Voices’ questions about what hospice team members do and don’t do (some patients have unrealistic expectations); how hospice responds in a pain crisis; how team members connect the family with social services; and, vitally, how they help shepherd caregivers through their loved one’s dying process.

Kimberly became a nurse “a little later in life; I was in my mid-thirties and had just had a child. I had been doing various jobs: working in theater, bookkeeping, waitressing. I hadn’t quite figured out what I wanted to do when I grew up. So I did some soul searching, and I realized I wanted to go to nursing school. So I did, and got my associate’s degree. [Kimberly expects to receive her bachelor’s degree in nursing this fall; she plans to continue on to a master’s.]

“Toward the end of my nursing training, someone from a hospice came to talk to the group. This was toward the tail end of the AIDS crisis. I assumed I’d be working with people with AIDS. I’d never even heard the word ‘hospice,’ but I’ve often gravitated toward working with older people. Something just clicked in my head when this woman used the term. It was ‘Yes! That’s the thing!'”

We asked Kimberly to demystify several issues about hospice care. (Her answers have been edited and condensed—with her approval.)

Q. Who gets to choose hospice?

Hospice is supportive care for people who are coming to the end of their lives and who have chosen to discontinue curative treatments like surgery or chemotherapy. It is designed for people of any age who have an end-stage illness such as cancer, heart disease, pulmonary disease, Alzheimer’s disease, or a condition that will severely limit a person’s life expectancy, and who a physician has determined will likely die within approximately six months if no further curative measures are available or chosen.

The hospice insurance-reimbursement benefit is based on a Medicare model that sets the standard as to what is expected in terms of documentation, visit frequency, etc. It’s important to understand that a patient does not have to be elderly to qualify for hospice care: most insurance policies, not just Medicare, provide a hospice benefit.

A useful primer on hospice in general—describing the various institutions that provide it, the insurance coverage that pays for it, and more—is available at the National Hospice and Palliative Care Organization, Whether this care for the dying is rendered in the patient’s home or in an institution, the NHPCO site notes, “At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so.”

Q. Kimberly, you’ve found that some families have unrealistic expectations about what home hospice care provides. What are they?

The hospice interdisciplinary team is a support system and skilled resource for patients, family, and caregivers. Sometimes families expect that the hospice will “take over” and provide the bulk of the day-to-day, minute-to-minute, hands-on work of providing care. It’s reasonable for caregivers to have those expectations, partially because that is how we perceive our medical system—that the hospice team will do the bathing, toileting, lifting, dressing, turning in bed. But hospice is not set up that way. Our home health aides [see page 2] do some of that work—a couple of hours a day, three or five days a week. Perhaps, if the patient qualifies for Medicaid, there will a Medicaid supplied home care worker, or the patient/family will privately hire a caregiver to do the hands-on day-to-day care. One job of the hospice nurse is to teach family and caregivers how to do these practical, hands-on jobs.

This hands-on work for the dying person is a difficult change for everybody. Your mother took care of you. Now she cannot stand on her own anymore. You have to learn how to put a diaper on your father. You are not in a hospital where someone else will do this kind of work; family members may need some time to come to grips with that.

That rainy day they have been saving for? This, hospice caregivers learn, is it.

Next page: What does the hospice team do?

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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