General Medical · Health

Hospice Care: A Primer for Patients and Their Caregivers

Q. Pain management is probably the most important concern for the patient and the caregiver. What would be your response to a wife who calls you at 2 in the morning, frantic over her husband’s pain?

We hope people don’t get frantic. Part of the nurse’s job is to monitor the effectiveness of medications, educate patients and caregivers on correct use of pain medications, consult with the hospice physician for pain medication adjustments, and anticipate changing needs as a patient’s condition declines or as a disease progresses.

Most people’s pain is well controlled, but sometimes there are symptoms that are tough to keep up with. When we find we have to ‘chase’ a symptom like pain and it is getting ahead of us despite frequent medication adjustments or other appropriate interventions, we may suggest “crisis care” [see page 4] or hospice inpatient care—at VNSNY our inpatient hospice unit, called Haven, is at Bellevue Hospital—for short -term management of uncontrolled symptoms in a setting where medications or dosing can be changed or administered more quickly and we can get the person more comfortable more quickly as well.

Some people have pain, but they’re reluctant to use pain medicine because they’re frightened of it they think that if they use it now, when they “really need it” it won’t work for them. This is not true. Opiate tolerance or pain escalation can be managed to maintain comfort; many people suffer needlessly because they are waiting for the moment ‘when they really need it,’ which may actually be right now!

Some people don’t want to take their medicine because they don’t like the way it makes them feel. That’s a legitimate complaint, but there’s tradeoff, because without it they may not be able to manage to do anything else—like eat or sleep, or even be comfortable enough to be awake. Because they’re always fighting this pain.

In these cases, I would encourage those who don’t trust the pain medicine to take just half the dose to see how it makes them feel. If that make them feel okay, fine. If it doesn’t do anything, then they could take the other half an hour from then. It’s important that people in pain feel they have a little bit of control over what they doing.

When someone starts having a pain crisis . . . sometimes we can anticipate that that may be coming down the line. So we coach people: “I know this is your dose now. If you find you have to take more doses, I really want you to call me if you have to take more than four doses during the day.” You give them the parameters they need to have so they’re not alone out there.

If we get the frantic call you mentioned, we ask lots of questions on the phone so we can describe the situation to the doctor: Is the pain in the bones or the nerves? The extent of the pain may change what we order and how often you take the dose.

And if necessary, we’ll up the patient’s treatment plan to hospice inpatient care or “crisis care.”

Next page: What is crisis care?

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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