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Dr West

Hospice is HELP: Avoid it at Your Peril

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I’m on call for my oncology group this weekend, and I’ve had the situation come up twice in less than 24 hours that a patient is in dire need of home-based symptom management, with plans for hospice just getting initiated in a mad scramble on a Saturday or Sunday.  In both cases, the patient is sick enough and far enough from the hospital that just evacuating them with a 911 call isn’t an effective way to solve the problem.  And so what could otherwise be a legal urgent delivery of pain medications to a hospice patient is a difficult night of toil and unnecessary suffering because there isn’t a mechanism to get medications or support for someone who will be enrolling on hospice tomorrow, after weeks of the patient and/or family resisting an appropriate and well-meaning recommendation to enroll earlier.

It’s a terrible shame that, in the US at least, hospice care is usually initiated at a point when death is just a few days or even hours away.  Too often it’s a race for hospice nurses to get to the patient in time to provide needed comfort and support in the last moments of a person’s life, after the patient and their family and friends have already struggled through the rapid changes and symptoms of dying.  If it isn’t “too little, too late”, it’s close.   But hospice teams can provide critical value and support if referrals are made long enough for the patients and families to develop a good relationship with the folks from hospice.

This seems to stem from a tendency to want to deny, to wish away, any acknowledgement that a person’s disease is terminal (sometimes by doctors, sometimes by families, sometimes by the patient himself or herself), as if avoiding the subject and the needed action will keep it from happening.  But a person will continue to decline, death will unfortunately ensue, and the only consequence of postponing to the point of critical distress and unavoidable recognition of the reality is that everyone experiences far, far more suffering and chaos than they would have otherwise.

It’s understandable that people don’t want to embrace a sad reality when death is becoming close enough to anticipate and plan for. In truth, death is rarely a beautiful experience, but it can often go from being terribly challenging and unpleasant to minimally so when there are people nearby who are equipped and motivated to help, and who have the experience to guide people.  I think it’s a very sad, regrettable mistake to not avail themselves of that help until it’s an absolute crisis.  

11 Responses to Hospice is HELP: Avoid it at Your Peril

  • Zemswife says:

    I have had the opportunity 3 times to work with hospice. The first time, it took until we were told that my Dad was in the active dying process. It was very scary at first, but as the 5 days till his death progressed, it turned to be a very comforting experience. The 2nd time, it was suggested by the memory care center that my Mom was living at, that we consider hospice. I was devastated but after speaking with the care team, realized that this was the best thing for her. She lived 9 months after she enrolled and they were able to provide physical, emotional and spiritual support to her and our family that was greatly appreciated. The third time was with my 54 year old husband last year that was diagnosed with stage IV lung cancer. I was mentally prepared to call in hospice right away, but he was willing to try chemo and radiation. We talked about what would happen when he made the decision that chemo and radiation weren’t options any longer. That happened for him after bone mets to his femur and spine were found. He declined surgery and the next day we had hospice at the house. We fully anticipated at least a month of hospice, but sadly he went into the active death process 5 days after and passed away 5 days after that. I can say from my experience that hospice was the best thing that could have happened for my family and me. It is human nature to want your loved ones to be with you longer but it comes to a certain point that we need to step out of that ‘heart’ decision and make a ‘brain’ decision and make our loved ones a comfortable as possible as they progress to the next stage.

  • ssm says:

    What are the decision points to request hospice? I was told I have 6-12 months to live by one doctor 5 years ago. I have progressive disease but I don’t believe I am terminal and of course doctors don’t want to play ‘God’ and tell me how me how much time I have left. I have enrolled in palliative care but don’t find that of much use. Are there guidelines for patients or physicians to recommend hospice care or begin the process?

  • Dr West
    Dr West says:

    The general guideline is that someone has a prognosis of 6 months or less to live, but as your situation illustrates, estimating prognosis is not a precise science. In some people with very slowly progressing disease, they may live far longer even when the prediction based on a broader population is that they will have a survival of less than 6 months. I use the rate of a patient’s disease progression and clinical decline (if any) as an important modifier of the more general statistics.

    As for the benefit, it can be minimal if a person is doing well and not experiencing much of a decline. But the role of the hospice team can be very fluid, initially just checking in and providing a little support as needed, but then eventually being involved on a daily basis and becoming essentially indispensable. The more problems a patient is experiencing, the more valuable that support can be.

    It sounds like you’re in the fortunate position of doing so well that you just don’t have much of a need for hospice or other palliative care services. Good for you — I hope that continues for a very long time.

    -Dr. West

  • pennybrdk says:

    I had Hospice Services for my husband for approximately one week before he died from SCLC. I felt a great relief from the support that we received. They were/are very loving and compassionate people. I still receive ongoing letters from them to offer assistance if needed. They held a Memorial Service for their patients several months after my husband died. It was beautiful and very touching! I never thought my husband would die at such a young age of 50. With the assistance of Hospice my husband was able to die at home. He was surrounded by all of his siblings, parents, children, my mother and myself. If death can be described as beautiful…his death was. The Pastor for Hospice asked us to lay our hands on my husband and recite the Lords Prayer…after doing so…within minutes my husband passed away. He did not suffer! I highly recommend Hospice. Please do not hesitate to call them!

  • Robert B says:

    I’m here under my husband’s name, RBauer. He passed last Sunday in my arms and pain-free because of Hospice. A few days and lots of phone calls and visits for medication changes and increases, but after a week his pain was under control. I cared for him here with methadone and morphine in his cheek until his last breath.
    Hospice is wonderful. And even in my current grief, they will follow with me for up to a year as his wife. They were on call 24/7 for anything I needed for him, and I used it even into the wee morning hours to get help for more frequent doses, increased doses, anything to make him more comfortable.
    I know Penny above. We share another site also. And Bob posted here and did tons of research here as his sclc progressed the past 17 months. This site also helped him tremendously with research and questions to ask his oncologist, trials that may have helped, nutrition and supplements, etc. Thank you all here for the wonderful information you provide to all those with this terrible disease.
    Deb Bauer, Robert’s wife.

  • Dr West
    Dr West says:

    Please accept my condolences. Thanks so much for posting here, which will help others. It’s very kind and thoughtful…

    We’re thinking of you.

  • certain spring says:

    I am sorry for your great loss, but thank you for posting. It is encouraging for patients like me to know that such a death is possible.

  • 1813r says:

    Do you have to stop chemo treatment in order to be in hospice? His last CT scan showed that the chemo had shrunk one tu or and no further spread seem. However, his fatigue and appetite is worsening. One oncologist says go hospice, the other says not yet. I don’t know what to do for him or me.

  • Dr West
    Dr West says:

    Unfortunately, that’s a real shortcoming of hospice care in the US, though it varies from one hospice service to another. Because a hospice service gets paid a pretty low daily amount to cover all of the service a person needs, most can’t afford to cover big ticket items, which typically include many chemotherapies and targeted therapies. At the same time, there is sometimes an issue with trying to focus on both comfort/quality of life and treatments that may cause many side effects, so it can be like trying to serve two masters, which is another reason why it often isn’t feasible to receive both chemotherapy and hospice support.

    -Dr. West

  • 1813r says:

    Dr. West, Thank you for your quick response as it will help me frame my questions at our Thursday onc appointment..

  • Katrina says:

    I am one who delayed Hospice for my late husband because I didn’t know what all it meant and the benefits. The fear of letting my husband think – or any medical doctors think – that we would just give up was not easy. I think it would be great if either the nurse would talk to you about hospice in detail and if patients/caregivers were given a card or brochure from the hospice the doctor recommends that outlined what it was, what it can do to help, and that you could get out of it if you “found” a trial that you wanted to try.

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