I began reading August Farewell on the seventh day of that summer month. The date coincides with the beginning of David Hallman’s narrative of his lover’s death two years prior, and memory of their decades-long relationship.
A book by a gay Canadian Christian man might seem remote to a woman like me, who’s married, Jewish and lives in New York City. But Hallman connects, effectively; his story sticks and might influence the near-death arrangements of any person living in our modern world.
Hallman recounts the death of a man, his partner William (Bill) Conklin, who’d lived for years with multiple sclerosis and its debilitating effects. In August, 2009 Conklin learned he had advanced pancreatic cancer. The story works through the author’s 16 daily notes on meetings with doctors, nurses and palliative care specialists, and visits with old friends and family.
The patient chose to die at home and his partner, Hallman, honored his wishes. Their story of calm, palliation and love at life’s end is heartening.
Why post this now? Because the book’s calmness, and message, lingers.
We’re up to point 9 on the list – and nearing the end – on Bending the Cost Curve in Cancer Care from the May 26 NEJM. The suggestion from Drs. Smith and Hillner is that doctors better integrate palliative care into usual oncology care.
The authors start this important section well:
We can reduce patients’ fears of abandonment by means of better-integrated palliative care. This topic is fraught with misunderstanding given the references to “death panels” during the recent debate concerning health care legislation…
Here they’re on target: Some patients think, mistakenly, that inclusion of palliative care in their treatment means their doctors are throwing in the towel. I’ve known some oncologists who think the same, who perceive palliative care as a last resort.
The truth is that palliative care, which aims to relieve symptoms, can be implemented at any point in the treatment of disease.
The authors go on to provide data that cancer patients who receive palliative care live just as long, or longer, than those who don’t, and that their medical bills are lower. The issue I have here is their choice of emphasis on a published study of the Aetna Compassionate Care Program in which nurses identified patients for palliative care by administrative claims, “thus bypassing the oncologist.” Evidently this strategy led to a doubling of hospice referrals and other possibly good effects.
Besides that the cited study was authored by employees of an insurance company, which I find unpalatable, the concept of having nurses do the referrals deflects the issue: that oncologists talk about palliative care with their patients, directly. Relying on nurses to carry out these conversations would, understandably, contribute to a sense of abandonment, even if the nurses do the job perfectly. A critical role oncologists is to communicate about treatment care options, part of the cognitive work considered in point 8 of this discussion.
But the main idea, that doctors should integrate palliative care into their cancer patients’ treatment planning, earlier, and as a supplement – and not a replacement – for potentially curative or tumor-shrinking strategies, is right on.
In other words (theirs): “The first step is a frank acknowledgment that changes are needed.” A bit AA-ish, but fair enough –
The authors talk about needed, frank discussions between doctors and patients. They emphasize that oncologists/docs drive up costs and provide poorer care by failing to talk with patients about the possibility of death, end-of-life care, and transitions in the focus of care from curative intent to palliation.
They review published findings on the topic:
In a study at our institution of 75 hospitalized patients with cancer, the oncologist had initiated a discussion of advance directives with only 2 patients.31 In a prospective, multicenter study of 360 patients, only 37% of the patients and their families could recall having a discussion about impending death with the physician.32 Such a discussion is a prerequisite to good planning. Oncologists wait until symptoms appear or until they believe that nothing more can be done.33 In one study, at 2 months before their death, half the patients with metastatic lung cancer had not had a discussion with their doctors about hospice.34 This may explain why in a recent series the average length of stay in hospice for patients with lung cancer was 4 days.35
Although I have questions about the specific methods for some of these references, the bottom line is clear: Oncologists wait too long to talk with their patients about palliative or hospice care.
What they’re saying is that doctors need to get a grip on the problem (to overcome their denial and inability to talk about death), if they want to help patients come to terms with the inevitable. Doing so would save billions each year in the US, and would also spare patients from futile treatments and needless suffering.
I couldn’t agree more. It’s a potential win/win, if physicians think realistically about the situation and possible outcomes, and speak openly – and gently, no matter what, with their patients.
Giving one drug or combination regimen, and then another, and another, and another, to cancer patients whose tumors resist multiple regimens is more likely to cause harm than good. Oncologists need be realistic with themselves and with their patients, in a kindly way, when treatments fail.
Options to consider, besides chemo, include palliation (which can be started at any time, including before and during chemotherapy), alternative approaches (such as hormonal or immune-based therapy, for some tumors), hospice care and participation in a clinical trial, as the authors suggest, based on the patient’s condition and preferences.
Annual direct costs for cancer care are projected to rise — from $104 billion in 20061 to over $173 billion in 2020 and beyond.2…Medical oncologists directly or indirectly control or influence the majority of cancer care costs, including the use and choice of drugs, the types of supportive care, the frequency of imaging, and the number and extent of hospitalizations…
The article responds, in part, to Dr. Howard Brody’s 2010 proposal that each medical specialty society find five ways to reduce waste in health care. The authors, from the Divisions of Hematology-Oncology and Palliative Care at Virginia Commonwealth University in Richmond VA, offer two lists:
Suggested Changes in Oncologists’ Behavior (from the paper, verbatim – Table 1):
1. Target surveillance testing or imaging to situations in which a benefit has been shown.
2. Limit second-line and third-line treatment for metastatic cancer to sequential monotherapies for most solid tumors.
3. Limit chemotherapy to patients with good performance status, with an exception for highly responsive disease.
4. Replace the routine use of white-cell-stimulating factors with a reduction in the chemotherapy dose in metastatic solid cancer.
5. For patients who are not responding to three consecutive regimens, limit further chemotherapy to clinical trials.
Suggested Changes in Attitudes and Practice (same, Table 2):
1. Oncologists need to recognize that the costs of cancer care are driven by what we do and what we do not do.
2. Both doctors and patients need to have more realistic expectations.
3. Realign compensation to value cognitive services, rather than chemotherapy, more highly.
4. Better integrate palliative care into usual oncology care (concurrent care).
5. The need for cost-effectiveness analysis and for some limits on care must be accepted.
For today, I’ll leave this provocative list without comment except to say that it should engender some long and meaningful, even helpful discussion.
For those of you who’ve been asleep for the past year: the health care costs conundrum remains unsolved. Our annual medical bills run in the neighborhood of $2.4 trillion and that number’s heading up. Reform, even in its watered-down, reddened form, has stalled.
Despite so much unending review of medical expenses – attributed variously to an unfit, aging population, expensive new cancer drugs, innovative procedures, insurance companies and big Pharma – there’s been surprisingly little consideration for patients’ preferences. What’s missing is a solid discussion of the type and extent of treatments people would want if they were sufficiently informed of their medical options and circumstances.
Maybe, if doctors would ask their adult patients how much care they really want, the price of health care would go down. That’s because many patients would choose less, at least in the way of technology, than their doctors prescribe. And more care.
What I’m talking about is the opposite of rationing. It’s about choosing.
Several recentstories have considered the problem of physicians not talking with their patients about treatment limits. Last month the journal Cancer published a study, based on canvassing over 4000 doctors who care for cancer patients in California, North Carolina, Iowa and Alabama, revealing that only a minority of physicians would raise the subject of a DNR order or hospice care for patients with metastatic cancer and a short life expectancy.
When it comes to recommending palliative care, aimed at patients’ nutrition and comfort, rather than cure, some doctors remain tight-lipped. Many good physicians, including cancer specialists, are reluctant to stop prescribing chemotherapy and aggressive treatments. The reasons vary. Based on my experience as a practicing oncologist, I’ll list a few:
Some doctors think it’s better for their patients if they are upbeat, and this may indeed be true. Conversely, many patients choose doctors who are optimistic: if you tell patients there are no treatment options, they’ll go elsewhere. Most patients, of course, do want treatment; more than a few are desperate enough to try anything a doctor says might work.
Another, unfortunate factor is financial pressure; giving treatment and doing procedures is far more lucrative than simple exam and discussion-based visits. I’m afraid, too, that many physicians don’t recognize the extent they’re influenced by effective marketing, usually blatant but sometimes subtle.
For others it’s an ego thing – doctors try to “outsmart” a disease, even when it’s not feasible, trying one therapy and the next, to no avail.
Harder to assess, still, is doctors’ internal unwillingness to give up on some patients because they care about them so much. Some excellent doctors may become so invested in a case that they, themselves, cannot be objective.
Besides, “throwing in the towel” is not something most good doctors like to do. And it’s not something most patients want to hear about.
Yet, maybe some dying patients would appreciate a doctor’s honesty –
These issues relate directly to the practice of oncology, the area of medicine I know best. But similar hesitations and conflicts of interest arise among doctors in most fields – cardiologists caring for people with severe heart disease, neurologists caring for people with end-stage Parkinson’s, and infectious disease experts caring for people with late-stage HIV, to name a few.
If doctors could somehow find the time, and take the trouble, to talk with their patients in a meaningful way, and then heed their patients’ wishes, they might find that many patients would, of their own volition, put a brake on health care spending.
For this reason, among the changes in health care I most favor is greater support for primary care and non-procedural services. If were paid more for thinking and communicating, rather than ordering tests and performing treatments in a perfunctory manner, they and their patients might opt for less expensive, more humane remedies.
Something I learned as a medical intern is that there are worse things than dying.
As I recall, it was sometime in April, 1988. I was putting a line in an old man with end-stage kidney disease, cancer (maybe), heart failure, bacteria in his blood and no consciousness. Prince was on the radio, loud, by his bedside. If you could call it that – the uncomfortable, curtained compartment didn’t seem like a good place for resting.
An attending physician, a smart guy I respected, approached me as I completed the procedure.
“It’s kind of like Dante’s seventh circle,” he noted.
Indeed. A clear, flexible tube drained greenish fluid from the man’s stomach through his nose. Gauze covered his eyes, just partially. His head, hands and feet swelled with fluid. A semi-opaque hard-plastic instrument linked the man’s trachea, through his paper-taped mouth, to a noisy breathing machine. His skin, barely covered by a stained hospital gown, was pale but blotchy from bleeding beneath. An arterial catheter inserted by his wrist, just where I might have taken his pulse had he been healthier. A fresh adhesive covered the cotton gauze and brownish anti-bacterial solution I’d placed over his lower right neck.
“Yeah,” I said as we walked out of the room to review another patient’s chart.
I wondered if the ICU staff would mind my changing the radio station, just in case the patient could hear but not tell us he preferred WQXR.
“There’s no way I would let this happen to me,” I remember thinking.
This month, a report in the ACS journal Cancer indicates that most U.S. physicians don’t talk with their patients about end-of-life issues until death is imminent, if they do so at all.
The study, based on canvassing over 4000 doctors who care for cancer patients in California, North Carolina, Iowa and Alabama revealed that only a minority of physicians would raise the subject of a DNR (do not resuscitate) order or the possibility of hospice care for a patient with metastatic cancer with a life expectancy of 4-6 months. The article has generated considerable, appropriate attention in the press and for good reason – it bears on health care costs, patients’ rights, doctors’ communication and time constraints and a host of points relevant to the practice of medicine in 2010.
For purposes of this post, today, what I’ll say is this much:
Don’t wait for your doctor to talk to you about death and dying. Be proactive about your wishes and the kind of care you wish to receive, especially if you’re sick with a serious medical condition. Take the initiative – document your end-of-life preferences as best you can, according to the law of your state, and tell your physicians about any limits you’d like to set on the care you might receive.
It’s a conversation worth having, early.
Here’s a very-partial list of resources for people who’d like to learn more about advance directives, living wills, DNR orders, hospice care and other end-of-life concerns:
Here’s my short list, culled from newsworthy developments that might improve health, reduce costs of care and better patients’ lives between now and 2020, starting this year:
1. “Real” Alternative Medicine. By this I don’t mean infinitely-diluted homeopathic solutions sold in fancy bottles at high prices, but real remedies extracted from nature and sometimes ancient practices.
2. Chemotherapy Pills. Why get treatment through an intravenous catheter if you can pop some pills instead? To be clear, some of the best and most effective cancer therapies require infusion. And just because a medication can be taken by mouth doesn’t mean the side effects are trivial.
But quite a few targeted therapies, like Gleevec or Tarceva, besides some old-fashioned drugs like Leukeran and new forms of old agents, like Xeloda, work just fine in pill or capsule form. Many patients, especially those with limited life expectancies, would gladly choose an oral combination therapy, the sort of medication cocktail taken by AIDS patients only for cancer, instead.
A gradual shift from intravenous to oral therapies for cancer would transform the practice, and economics, of oncology as it’s practiced in North America.
3. Environmental Hazards. Where we live, what we carry and ingest surely affect our bodies and our cells. We’ve learned about Bisphenol A (BPA), an estrogen-like molecule that leaches from plastic food containers into the foods we eat.
Now, we should expect and demand more information on what’s really in the water, so to speak. And in our sunscreens, and in so many chemicals we use routinely and without hesitation.
4. Health Informatics. The Pew Research Center reports that two thirds of American adults are going on-line for health information.
But that’s only part of the story. Sure, the internet makes it easier for people to learn about medical conditions, but the same applies to physicians. In principle, the internet should help doctors stay current, make sound decisions and provide better care.
Electronic health records (EHRs) will, in the long run, reduce costs from duplicate testing, faxing and re-faxing of reports and, more importantly, lessen errors from illegible or incomplete medical files that are too-often inaccessible. Over the next decade, we’ll see how patients find value in their own records (or don’t), how privacy issues play out, and if electronic documentation of millions of health reports provides, in itself, new information on disease trends and treatment effects.
For a cancer patient undergoing therapy, the current standard involves multiple scans at intervals of months or even weeks, to see how a tumor is responding, or not, to a particular treatment regimen. Once in remission, some people undergo additional periodic studies just to be sure there’s no evidence for the tumor’s recurrence.
The news is that easier, more accurate and less dangerous methods for monitoring tumors are forthcoming. Using microchip-based detectors doctors can, using just a few drops of blood, measure the extent of a colon or lung cancer and examine how tumor cell genetics change during treatment. Over time, this and similar technologies will improve and, with standardization in manufacturing, come down in price.
6. Palliative Care. Not everyone wants to spend the last days of his or her life in an ICU hooked up to a ventilator with tubes and intravenous lines. But few people prepare for the end of life when it happens in a hospital, and doctors don’t generally talk about it in advance.
Palliative care, the kind of medicine aimed at treating symptoms, rather than achieving cure, is underused in the United States. Over the next decade, we should see better education of doctors in this essential field in cancer medicine, and of the public, too.
7. Cancer Vaccines. These work by immunizing a person against a tumor just as one might, instead, inoculate a person with a modified virus or bacterium to stave off infection.
Cancer vaccines would stimulate and harness the body’s normal immune cells to confront and eradicate cancer cells. This year, the FDA will take another look at Provenge, a vaccine that’s designed to treat men with prostate cancer. Similar biological agents are in the works for most other tumor types.
We’ll be hearing more on these innovative drugs that, so far in clinical trials, appear to have few side effects. Whether the vaccines are effective – if they can shrink tumors – we’ll have to wait and see.