Terminal prostate cancer, quality of death, and hospice care

The role of hospice care and its potential benefits — in terms of quality of life and quality of death — for men who are actually dying of prostate cancer is theoretically well understood but relatively little studied. (It is important to appreciate that hospice care is often provided in the home and does not necessarily require that a patient be moved to an actual hospice facilty.)

Bergman et al. used Surveillance, Epidemiology, and End Results–Medicare data to identify a cohort of Medicare beneficiaries who died of prostate cancer between 1992 and 2005, characterize hospice use by these patients, and compare the use of high-intensity care between those who did or did not enroll in hospice.

Their top-line results were as follows:

  • 14,521 men aged 66 years and older were identified as dying of prostate cancer.
  • 7,646/14,521 patients (53 percent) used hospice care for an average (median) of 24 days.
  • The following were associated with a lower likelihood of hospice use
    • African American ethnicity (odds ratio [OR] = 0.78).
    • A higher Charlson comorbidity index (OR = 0.49)
  • The following were associated with a higher likelihood of hospice use
    • Having a partner (OR = 1.23)
    • A more recent year of death (OR = 1.12)
  • Men dying of prostate cancer and enrolled in hospice were less likely to receive high-intensity care (OR = 0.82), including intensive care unit admissions, inpatient stays, and multiple emergency department visits.

The authors conclude that, although more individuals are receiving the benefits of hospice care, the timing of hospice referral remains poor — even though men who enroll in hospice are significantly less likely to need high-intensity, acute, end-of-life care.

In a HealthDay report on Bloomberg Businessweek, it further states that “the study team found that most wait until the very end — often just a week or two before their death — before enrolling in a hospice program.” Indeed, more than 20 percent weren’t enrolled in hospice care until the very last week of their life.

Dr. Mark Litwin, the study’s senior author stated that, “It’s important that we maximize quality of life when quantity of life cannot be changed,” in a media release from  the University of California, Los Angeles’ Jonsson Cancer Center. “Most men are being referred to hospice too late and that timing hasn’t changed in the last 20 years, which is unfortunate,” he added. “As cancer specialists, we should offer these patients the best quality of life that we can, and that often means offering them the best quality of death that we can give them.”

The physical and psychosocial support offered by hospice care is designed to ease the experience of dying, rather than to prolong life. However, as demonstrated in a recent study reported in the New England Journal of Medicine (albeit not specific to prostate cancer patients), hospice care may actually be associated with a survival benefit as well as quality of life benefits in some cancer patients.

Indeed, appropriate hospice use (usually over a period of rather more than 7 days) may be able to improve the quality of the last months of a patient’s life, minimize the need for high-intensity, high-cost, acute intensive care, and reduce stress on the patient and other family members. There is a significant cultural prejudice today that tells us to prolong life at all costs. This is not always in the best interests of the patient or the family once a patient is in a terminal condition. This cultural predjudice is common even among the medical profession.

“As doctors, we often don’t want to give up,” said Litwin. “We’ve sworn to help our patients and a death is a failure to us, but the optimization of life should be our goal. Sometimes survival is of such poor quality that it should not be our primary goal.”

Mark Litwin, MD, is a member of the Scientific Advisory Board of The “New” Prostate Cancer InfoLink.

7 Responses

  1. Mike:

    Very interesting. One of the things about prostate cancer is that most patients who are going to die from the disease have a lot of time to make all these preparations, but apparently many do not. I know that in my case I am making contigency plans way in advance. Emotionally, I hope I never need them but intellectually I know now is the time to make the plans.

  2. Bill: I hope others can learn from your wisdom … and that you never need to take advantage of it!

  3. It is good to see this kind of posting.

    One of the strangest aspects (at least as far as I am concerned) of prostate cancer forums is the reluctance to discuss death: how it happens, when it might happen; how to deal with it. Yet the fear of death is the driver behind most decisions as far as testing, screening, diagnosis and treatment options are concerned.

    In the early days of my diagnosis I asked these kind of questions on various lists and forums to an absolute dead response. I finally wrote a piece myself for my site which I entitled The Elephant In The Room.

    In researching for material for this piece I found an article on PSA Rising, which said in part:

    “Doctors who refer terminally ill patients to hospice care are consistently overoptimistic, according to a study by University of Chicago researchers published in the February 19, 2000, issue of the British Medical Journal. Physicians, on average, predicted that their dying patients would live 5.3 times longer than they actually did. In only 20 percent of cases were the doctors’ predictions accurate.”

    Perhaps this may point to why there are so many “late arrivals” to hospice programs? I found this optimism somewhat ironic in contrast to the pessimism so often expressed at diagnosis, where, many men report, they are given shorter odds of survival than might be adduced from current data.

    I have no doubts of the value of the hospice approach. A good friend of mine died of prostate cancer within months of my diagnosis and spent his last months in comparative peace thanks to this movement. He was only admitted to the hospice itself for the last 2 weeks or so of his life, but had been home attended until then.

  4. My dad is currently dying with recurrent, advanced prostate cancer. One of the most frustrating things for me is that I can find hardly anything to read regarding what to expect in regards to the dying process with this disease. Everything is geared toward fighting the disease which is great, but you also need to know about what to expect when the fight is over. I actually posted to one message board regarding prostate cancer and was blasted about my dad’s decision to stop the fight. I happen to be one of those people that like to go into things with as much information as possible and I cannot believe the limited amount of information I have been able to find. My dad is currently in an inpatient hospice facility, and is probably pretty close to the end. These past eight months have been hard, but I think would have been better if I could have found information to read.

    Thanks for letting me vent.

  5. Dear Sheila:

    One of problems in talking about HOW men die from prostate cancer is that: (a) It has changed radically from the situation 20 years ago, when many men died in great pain from the severe complications of large-scale bone metastasis. (b) There can be many, many reasons that trigger the eventual death of a man with prostate cancer today, most specifically including the consequences of immune suppression as a consequence of chemotherapy and the concomitant problems of the aging process.

    Even Terry Herbert, in his article The Elephant in the Room, was unable to offer a simple and straightforward explanation of the variety of ways in which prostate cancer actually becomes a truly terminal clinical condition.

    I am very sorry to hear that people on another forum were abusive about your father’s decision to accept the reality of his situation. Unfortunately there are all too many people who really do not appreciate what it is like to reach a terminal stage with a condition like prostate cancer. There does come a time for many, many men, when acceptance of the reality of the situation can actually allow for the man and his family to come to peace with that reality.

  6. I just discovered this site and am very pleased. I have spent many hours searching for information to try and prepare myself so that I can be a better caregiver to my father. He started Hospice early. He is a man that is not afraid to talk about the hard stuff which makes it much easier. He decided to discontinue a 15-year battle with more than one type of cancer. The prostate cancer has been recurrent and is now metastic. Like Sheila it has been very difficult to find resources. The Hospice team has been wonderful. In my community there are no in-patient Hospice facilities so I am preparing a room in my home to care for my father. I am going to read the article mentioned above. Do you have any other suggestions for information so I can help him to be as comfortable as possible?

  7. Dear Carol:

    The hospice team will be able to give you specific help to make your father physically as comfortable as they and you can. That is going to depend on his individual circumstances.

    What your father is going to need from you is emotional support and understanding. There are ways that you may be able to help him feel that he is leaving a piece of himself behind for you and your brothers and sisters (if you have any) and for your and their children — his grandkids — too (if there are any).

    Get a tape-recorder. Encourage him to tell stories about what he has done in his life and the things he is proud of. Work with him to turn them into a “memory book” that he can control the content of, so that you have something that he knows can get passed down to future generations. If you can, hunt down old family photographs that maybe you can use to illustrate the stories.

    There is a formal process known as dignity therapy which uses these and other methods to help people with terminal illness. What I am suggesting is not a cvomplete “dignity therapy” regimen (which really needs a trained therapist; see this article), but it is a way of using aspects of dignity therapy to help your Dad understand how much he has meant to those around him.

    Onviously you can’t and shouldn’t push him if he is not interested, but it is very possible he will be … and he may now be ready and able to share things with you that he has never felt able to share before.

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