The tension between oncology and palliative care

One of the benefits of being an oncologist is that, as a rule, people appreciate our work.  That does not mean they want to hear about our day, and the response when someone learns my vocation is rarely, “Hey, that’s sounds like fun!”

Nonetheless, at least there is a modicum of respect.  However, I found a group of people with major questions about the work of cancer docs or at least how we do it.

Recently, I attended the 25th Anniversary meeting of the AAHPM, the American Association of Hospice and Palliative Medicine.  This was a first rate, extremely well organized, cutting-edge convention of thousands of doctors, nurses, social workers, pharmacists, administrators, leaders and researchers, who devote their lives to quality chronic and end-of-life care. They discussed the latest research, health policy, presented new ideas and networked around this vital area of medical care. I attended a very cool New Orleans style mock funeral, 6-piece brass band and all.  However, as one of the few oncologists present, I can say that as a group the AAHPM crew are highly critical of my specialty and I must conclude it is our fault.

The reality exists that oncologists are not likely to have early discussions about end-of-life planning or share with their patients honest prognostic data.  In the guise of preserving hope, we tend to provide treatment in lieu of information and rarely will we give the option of doing nothing. While almost half of those dying in America last year were on hospice, too few of them were cancer patients and they were often referred late. The average hospice referral occurs when the patient has less than 20 days to live, even though the hospice benefit gives at least six months of support.  In fact, a large number of cancer patients receive chemotherapy in the last two weeks of their lives and a disproportionate number die in hospitals, instead of at home.

Hospice and palliative care physicians would say that the oncologist should be having honest conversations regarding life planning, from early in each case, asking whether patients would wish to be supported by machines, what goals they have for the remainder of their lives or at least suggest completing an advance directive (AD).  Oncologists, who apparently believe the word “die” contains four letters or has the power to kill, tend to focus on getting their patients safely through each treatment, and they would say that too early end-of-life discussions are tantamount to giving up.

The problem is that when we do not plan, especially for the inevitable, we risk chaos and unneeded suffering.  A dangerous gap of information occurs when we only discuss disease, diagnosis and therapy and do not review side effects, alternatives and long-term desires.  Patients fall into this chasm of absent communication and experience pain, fear, and lost opportunity.

Palliative medicine and hospice offers to each patient the opportunity for improved life quality and the chance to live better and longer.  Oncologists need to learn that it is possible, and in deed preferable, to have very early discussions about end-of-life choice.  Palliative medicine practitioners must be sensitive to the goals of oncologists, who are trying to extend and improve life by directly attacking the disease.  These two specialties have a lot to teach each other and patients.  We must honestly communicate with each patient in order to achieve the quality of life they deserve.

James C. Salwitz is an oncologist who blogs at Sunrise Rounds.

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  • buzzkillerjsmith

    Not likely to have appropriately early discussions about end-of-life planning or to provide honest prognostic info? Uh, maybe you all should consider doing those things. Just sayin’.

  • SaraJMD

    It’s also worth mentioning the reimbursement and even prestige incentives to “do everything,” enroll patients in trials, etc. even when it is essentially futile. I’m not saying that oncologists (or even the employers of oncologists) are bad people, but it doesn’t help that our system effectively pays physicians more NOT to do something really difficult like have a frank discussion of prognosis and goals of treatment with terminally ill patients.

  • Katie Brown

    It can be a catch 22, idyllically hopeful or doom and gloom… I think these discussions should be driven by the prognosis, treatment options available and whether or not a cure is in reach- and ALSO by the will of the patient and what the patient wants. My father had a terminal prognosis. Chemo was given two weeks before he died. He fought to the very end- which was what he said he wanted to do and ultimately died in the hospital. He wouldn’t have had it any other way. For him there was no other choice and to stop and have a discussion on hospice or end of life care would have defeated him even more than the cancer had.

  • meyati

    My first oncologist said that I was too detailed oriented, and I asked too many questions. First, I can’t get a straight answer from anybody about anything about administrative procedures-not then and not now. I had to be hospitalized from a dog bite that regular ER mismanaged. My new oncologist asked me to drop by-some staff said that I should’ve been admitted to a cancer clinic in that building. Maybe part of the trouble is that nobody knows what’s going on-everybody leaves things to somebody else.

    Tell me, is asking how long it would take to get a prosthetic face a legitimate question? About how would I live with my face bones cut out? How do you take care of such a wound? What would be done with my body while waiting for a new face? How would my pain be managed? I watched my father suffer greatly. I’m very concerned about pain management-but they act like I’m a dope addict. I’m allergic to acetaminophen, which upsets many.

    The first doctor told me that if I were younger, that I would go to another state and have my face and eye removed. I’m not sure that I would want my young children to see me like that. I’m not sure that I’d want the family’s finances sucked dry. I’m not sure that I’d want my children’s lives disrupted and psychological damage done to them with a visible incurable cancer on my face.

    I’m not sure if it’s MD Anderson, Presbyterian, or what, but I was told that I couldn’t have hospice until the very end, the last few months. I can’t even apply for forgiveness for my student loans until the last 2 weeks, as if I’d be mentally alert to think of that and physically able to do the paperwork.

    I seem to be in remission from radiation. I’m just waiting to get the radiology report on my CAT Scan. I fought with my first doctor and he didn’t even do follow-up-no appts. Nothing.

    I was bit by a dog, was in ER in 15 minutes, and told them that I just finished radiation for incurable cancer-and they didn’t follow protocol. 2 days later I was on a general floor getting IV antibiotics. My new head oncologist asked me to come in. The nurses asked me why my doctor I didn’t send me to some cancer clinic/ward- that’s on the first floor of that building. Nobody told me that it’s there or exactly what it’s for.

    Honestly, I’ve been in radiology and family members were crying because they didn’t want to be sent there. I don’t know how to get in there, and I’m not sure that I want to. I told them that my PCP probably wanted me to be with doctors that know more about dog bites.

  • AnonRD

    I have worked on both sides of the fence, oncology and hospice/palliative care. I have also observed a friend with young children die from cancer. My experience is that too many doctors view these two options as mutually exclusive and therefore do not appreciate the middle ground which is where most patients live between diagnosis and either death or remission/cure. I am of the opinion that cancer treatment should include both disciplines (onc and palliative care with hospice as an extension if/when it becomes appropriate) as a standard of care unless there is a very high likelihood of cure. It should be the patient who ultimately decides how agressive to be treated, but they cannot make an informed choice without having access accurate information specific to their circumstances. All too often I witness patients with stage IV disease and their families who seem to expect a full cure even though the treatment they are receiving is clearly palliative in nature. Sometimes it is denial, but sometimes they have never been told as much in clear language. The end of their lives then are filled with anxiety, untreated depression, and chaos that could have been mitigated by a palliative team approach.

  • sdietrich17

    As a Family Physician, I have often experienced, with my patients, some frustration at the seeming inability of oncologists to face the reality of a situation, discuss what the patient wants, and refer to Hospice, as appropriate. The two sides of the issue, ie palliation vs treatment, should be part of one package, and should be a collaborative discussion between patient and Doctor.

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