A “potentially practice-changing” consensus of expert opinion was published online early this month by the American Society of Clinical Oncology and directed to its members who are physicians who treat cancer. ASCO wants to end the current, inhumane practice that makes people with advanced cancer choose between treatment and comfort care via hospice. Instead, both should be offered at the same time, according to the new report. Unfortunately, Medicare will pay for the oncologist who administers chemotherapy but withholds payment for hospice care until the patient agrees to stop life prolonging or curative treatment.
Seven randomized trials provided the impetus for ASCO’s new directive; all involved elderly people with advanced cancer or other severe illnesses. The trials showed that palliative care can improve quality of life and in some cases prolong survival and reduce futile care. ASCO defines palliative care as “care focused on the relief of suffering, in all of its dimensions, throughout the course of a patient’s illness.”
What follows is an interview with a co-author of the ASCO directive, Diane E. Meier, MD, Director of the Center to Advance Palliative Care/Mt. Sinai School of Medicine, New York City.
You are a pioneering advocate for palliative care and your message about its importance goes well beyond advanced cancer.
The most important message for older adults is this: Care that is focused both on life prolongation or disease management and care that is focused on maximizing quality of life should not be seen as ‘either or’. First of all, for most serious illnesses they are one and the same. If, for example, you have heart failure or emphysema, the treatments will make you feel better and improve your function, so the distinction is false. Secondly, care that is focused on improving quality of life and function also prolongs life. There are now five or six studies showing that. People whose pain is managed, whose depression is treated, whose families are supported, who have the information they need, who feel they are in control, live longer than ones who don’t. So this notion that people have to make a choice between these two philosophies of care is misleading and destructive, in my view.
Why do you say it’s destructive?
It makes people feel like they are choosing between an earlier death and a good quality of life, or a later death and a horrible quality of life. That’s a false choice, and it just causes fear and anxiety, and it also delays patients’ access to palliative care because everybody wants to live as long as possible. The fact is that care focused on quality of life at the same time as disease-directed treatment results in the longest – and best life.
So you are saying that people under active treatment do not have their pain treated adequately.
Yes, that’s a major reason for the growth of palliative care in the U.S. where medical care reflects the disease-specific focus of medical specialists. So the nephrologists focus on the kidney, the oncologists on the tumor, cardiologists on the heart, etc. and not on the experience of the person in whom that organ sits.
So people in this situation should ask if there’s a palliative care team…
Yes, exactly. People need to demand it, and until we get an informed public demanding this care, it’s really hard to move the health care system. Public demand is absolutely key, and one of the barriers to public demand has been this lie that’s out there — that [palliative care] is what you get when there’s nothing more that we can do for your disease—a sort of consolation prize. And for older adults that lie has been a highly effective and very destructive message.
You have not been referring to hospice. Say something about Medicare’s role in that choice.
Hospice, by statute, is limited to people with a predictable prognosis, and patients are also required to agree to sign away their regular Medicare coverage. Medicare requires two physicians to sign a paper saying you are likely to be dead within six months. And I can tell you that we doctors cannot predict when someone’s going to die, even when death is only weeks away. This expectation that doctors know who is going to die soon is a major reason for very late referrals to hospice.
Second, the beneficiary or the beneficiary’s surrogate has to sign a paper that says in return for the Medicare hospice benefit, the beneficiary agrees to give up other Medicare coverage. Patients don’t want to sign that … quite understandably. So the result is most people who need palliative care don’t get it because of the restrictions written into the law defining the Medicare hospice benefit. These restrictions left most people with serious illness without access to quality of life focused care. The recognition of this gap has led to the very rapid growth in non-hospice palliative care in the U.S. because there are no restrictions. If you need care focused on your quality of life—the pain symptoms and stress of a serious illness—you can get it through palliative care at the same time as you are pursuing curative and life prolonging treatment.
How can people find out where palliative care is available in their part of the country?
They can go to www.getpalliativecare.org – this consumer website has a directory listing all the hospitals in the U.S. with palliative care teams and their contact information. At our website www.capc.org you can find will see the results of our opinion research of last June. The public strongly endorses the following description of palliative care, across all political parties: “Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness – whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.”
Interview conducted by Maryann Napoli, Center for Medical Consumers(c)