General Medical · Health

Hospice Care: A Primer for Patients and Their Caregivers

Q. What, then, does the hospice team do?

The team works with the patient and family to determine what their goals of care are (like avoiding hospitalization) and supporting and educating about hospice resources. A nurse, in collaboration with the patient’s physician, creates an initial care plan that includes medical, physical, psychosocial, and spiritual needs. He/she will be responsible for coordinating care, including educating caregivers about medications, treatments, and day-to-day care activities. The nurse visits the patient according to his or her need, which will vary depending on the acuity of the illness—nursing visits average around once per week when symptoms are managed, and more often if there is a problem.

A social worker visits, also based on patient or family need, not only for one-on-one counseling of both patient and caregiver, but to assist with practical issues like “We need to figure out how to hire somebody overnight,” or how to get the patient on Medicaid.

A non-denominational spiritual counselor is available, whether for specific religious or spiritual issues or for being with a patient or family member in what might be described as the “in-between places”— not a physical need, exactly, or a social need: We all have the in-between places.

The interdisciplinary team may also include a volunteer, visits from a rehab therapist or registered dietician, or a hospice aide. In New York State, the hospice aide is a licensed Home Health Aide (HHA) position requiring 75 hours of training. The HHA visits a few hours per week to help people with personal care—get washed, dressed; to cook a meal for them; to help another caretaker with a frail patient; to teach family members techniques for doing these tasks.

The nurse is responsible for contacting the patient’s physician to keep him/her updated and to get orders for medication and treatments. Patients may continue to receive care from their primary physician if both the patient and physician choose to continue their relationship.

The hospice also has a medical director whose role is to ensure that hospice certification and recertification criteria are met. The hospice medical director is also present at our weekly interdisciplinary meetings and is on call 24 hours a day, 7 days a week for medication and treatment management consultation; the hospice medical director also makes home visits when indicated. A hospice physician or nurse practitioner is required to visit hospice Medicare patients after their first 180 days on service, and every 60 days after that, to ensure that eligibility criteria are met. Hospice physicians and nurse practitioners may also visit patients for complex symptom management issues when needed and requested by the team.

All in all, the team’s job is to help patients, family members, and caregivers learn to manage the end-of-life specific care needs for a person who will soon be dying and who wishes to remain at home and focus on comfort-oriented care. Hospice care at home is not turning the home into a hospital, but making the home environment a safe and comfortable place to die.

Next page: How hospice handles pain management

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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