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Dr West

Why do we fall so short with hospice care in the US?

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I am a great fan of hospice services and feel that it’s a terrible shortcoming of the US health care system, and particularly our management of cancer care, that hospice is so underutilized and typically delayed until a terminally ill patient is within their last few days of life. Hospice care is meant to be available to people in their last six months of life, and many patients and families express a feeling after they ultimately sign up with hospice services that they wish they had started sooner. Many of the best experiences occur when patients, caregivers, and the hospice team work together for at least weeks, if not months, but that’s all too rare. Why do patients and physicians delay in availing themselves of hospice care?

While I believe a major contributor is the difficulty we have as a society to come to terms with the inevitability of death (a topic worthy of its own deep discussions), I think a very practical limitation is the requirement that patient and physician make a “Sophie’s choice” between anti-cancer treatment and diligent attention to quality of life/symptom management. Of course, oncologists and other members of the medical team should be addressing cancer- and treatment-related symptoms during the time that they are delivering chemotherapy, radiation, and other treatments aimed at cure or prolonging survival, but these factors all too commonly fall to secondary or tertiary concerns during that time. Hospice and palliative care specialists provide that focus on quality of life, but most hospice programs require their patients to no longer be receiving active anti-cancer treatments. This is a reality forced by the fact that become the entity responsible for health care costs for a patient once a patient is enrolled on hospice, and they receive a very modest per diem allowance to cover the various needs of their patients that essentially precludes them from covering the expensive costs of these treatments.

A problem with this forced dichotomy between cancer fighting and maximizing quality of life means that the most common practice is to prolong cancer fighting mode until it is (sometimes literally) painfully clear that every credible anti-cancer treatment option has been totally exhausted. Oncologists want to provide every opportunity for their patients, and they don’t want to be perceived as “giving up on” their patients by transitioning to hospice, which is a prevalent perception by patients and caregivers. Meanwhile, most patients don’t want to leave treatment options with even very limited prospects for benefit untested, so they understandably balk on hospice if it will preclude them from receiving these opportunities.

The net result is that patients that do enroll on hospice experience an all too brief benefit from their support. I have been saddened to see that so many people see hospice as an option you only pursue when someone is bedridden and death is almost imminent and have wondered why that is. The truth is that it this is a correct association based on the patterns of how hospice is used in the US today.

One practical change that I believe would substantially address these major problems would be to integrate palliative care and/or hospice far earlier, in a way that isn’t mutually exclusive with active treatment of a cancer. This is essentially the model that was introduced in the very important article by Jennifer Temel and colleagues from the New England Journal of Medicine that showed an improvement in both survival and several quality of life parameters for lung cancer patients who were enrolled on a palliative care program early on in their treatment course, along with their cancer treatments. Here is her graphical illustration of the current model vs. an alternative model that doesn’t force physicians and patients to choose between cancer treatment and optimization of their quality of life:

cancer-treatment-and-palliative-care-transitions (click on image to enlarge)

Since patients who received early palliative care were also hospitalized less and were less likely to receive (futile) aggressive end of life care, the costs for this intervention are likely going to be less even as they live longer and have a better quality of life during that time. In an ideal world, insurers would recognize that covering relatively inexpensive hospice services along with conventional cancer treatments could provide better care and a better quality of life for patients without a cost increase, and perhaps even with a savings. That may be a lofty goal, but it’s at least encouraging to see that the field of palliative care medicine has been growing rapidly as its own specialty that is being followed by a proliferation of dedicated programs at more and more hospitals and cancer centers. While not the same as a hospice program, such specialists working along with the oncologists more focused on the next cancer treatment can achieve the more seamless integration of goals that shouldn’t be competing with each other.

We shouldn’t require patients and physicians to choose between cancer treatment and optimal comfort. We need to find a way to do better.


7 Responses to Why do we fall so short with hospice care in the US?

  • tanny says:

    I’m reminded how we strive for new drugs to help us achieve greater OS and better PFS, and yet hospice (at an earlier stage) could address and in fact improve both of these very things that we look for in new treatments. But on the other hand I understand the will to fight until the very end; if only like you said Dr. West, we could find a way to truly integrate both so that they work hand-in-hand. I wonder if this is something I’ll see in my lifetime.

  • catdander forum moderator
    catdander says:

    Thank you Dr. West.
    I agree we shouldn’t require patients and physicians to make the choice between anticancer treatment and hospice treatment. It’s quite disconcerting to know that most people are not aware enough to know there’s this difficult decision to be made until it’s too late to make an informed decision.
    I would be interested in how you and how you help your patients make that decision.

  • suspenders says:

    Thank You. I have small cell lung cancer and have just finished the first round of chemo.
    Amazingly, I am feeling better than I have in six months. I also know the aggressive route this cancer takes. When the doctor looks at the pet scan after the fourth round of drugs, I would like to be enrolled in hospice because I know the eventual outcome.Yes, radiation comes next, the brain and wherever else but it’s a stop gap measure not curative. Why not get comfort? It’s crazy-the either or thing. Carmen

  • Dr West
    Dr West says:

    I think the best approach is to initiate conversations that introduce this concept, even if it isn’t the leading option, early on. This way, it doesn’t blind side anyone, and as a person moves through treatment, you lay out the potential scenarios and options depending on how a person does with the next treatment. This way, a person knows that hospice is likely to be recommended as an increasing strong option as various treatment options are exhausted and the benefits of the ones that have been given are less clear.

    However, the true best situation would be one in which you could have both dimensions of care administered simultaneously and just gradually increase the focus on palliation and de-emphasize the anti-cancer approaches as each person’s circumstances dictate.

  • Laya D. says:

    HI Dr. West:

    I’m having a little bit of a hard time thinking of a situation where a patient can receive palliative care and cancer treatment simultaneously. The only situation I can think of off the top of my head is when a Stage 4 patient receives radiation for a tumor that has grown into the bronchius. So, the radiation is not curative – – it’s palliative – – but it also is killing tumor (i.e., treating cancer). But, I have a feeling that this is not the situation you are describing. Can you provide some concrete illustrations of what you mean by this type of simultanous care?

    Thanks in advance,
    Laya

  • ts says:

    Laya,

    My thought is that focusing on quality of life while undergoing cancer treatment would become part of the healthcare team approach. So many people write in with serious side effects from treatment that they afraid to discuss with their busy oncologist. Some people don’t have easy access to nurses or doctors to discuss comfort, either thru drugs or other palliative care that might decrease symptoms and side effects.

    In some countries, a home health nurse is assigned at the beginning of treatment. They come to see if your home is conducive to your needs as you go through treatment, they can come out to address things such as need for supplemental oxygen, supportive care, etc.

    Those of us lucky/blessed with generous caregivers can get plenty of support for meals, chores, appointments, errands. I feel so much sadness for people living on their own, going to chemo and radiation by bus or taxi, not eating or sleeping well because they don’t know what to do. If you fall between the cracks of not having someone and not having the financial resources to pay for help, what do you do?

  • Rita says:

    How wonderful it would be to have a palliative care nurse visit our home once in a while. My husband has stage IV non-small cell lung cancer and we have a WONDERFUL oncologist, and yet, things come up that we may forget/neglect to tell her at my husband’s visits. Having a palliative care nurse now, before hospice, might actually help free my husband from some of his pain. Thank you for this post, Dr. West.

    Rita

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