During recent debate over health care reform, the brouhaha over so-called death panels was cynical, dangerous, erroneous and detrimental to patient care. And New York State is fighting back.
The histrionics focused on a provision in the Congressional bill that called for physicians to offer information on palliative care--pain and symptom management--to patients diagnosed with terminal illness. No action was required by physicians beyond the providing of information.
Anyone who's been hospitalized or seriously ill and found relief from severe pain or terrible discomfort can imagine the relief that comes when you are genuinely listened to, when experts take action in accordance with how you are feeling and what is most important to you. Focusing on living life to the fullest, palliative care is greatly beneficial for patients at any stage of advanced, progressive illness, regardless of prognosis, and can be provided along with curative therapies.
New York Takes the Lead
While the federal provision was derailed by misinformation and timorous politics, the New York Palliative Care Information Act recently passed the state legislature and was signed into law by Governor David Paterson. This is very good news for New Yorkers (and I applaud our state legislators on this one). Such a law both is humane and, as mounting evidence shows, promotes good medicine. In this day and age, with the availability of advanced, highly technological treatment options coupled with a life-at-any-cost outlook, the new New York law is an important step in the right direction because it presents patients a broader picture of their options when time is limited.
The law requires physicians treating patients with an advanced, progressive, life-limiting illness to offer--in writing, in conversation, or by way of referral--information on patient options, including pain management and hospice care, as well as the possibilities of further treatment. This means that patients suffering from terminal illnesses such as heart disease, lung disease, dementia or cancer--along with their families and physicians--can make informed decisions about end-of-life care, decisions that include emotional, social and familial considerations as well as the strictly medical.
As director of Visiting Nurse Service of New York Hospice Care, I've seen first-hand how profoundly hospice care can improve our patients lives, even though time is short. In regular communication with our patients and attuned to their priorities, we help New Yorkers with life-limiting illness enjoy the comforts of home and family, draw on social and emotional support, and manage symptoms such as pain, shortness of breath, nausea, extreme fatigue, loss of appetite and inability to sleep. This means treating the person, not just the illness, and managing daily connections, not just disease progression.
Quality and Quantity of Life
Palliative care not only leads to better quality of life, but it can also help patients live longer. Last month, the New England Journal of Medicine reported that among 151 patients newly diagnosed with metastatic lung cancer, those who at the start of the trial received palliative care in addition to standard cancer treatment lived nearly three months longer than those who received only cancer treatment. The palliative care group also reported less depression and a better quality of life, and they were less likely to choose aggressive (often painful and uncomfortable) end-of-life care.
Previous data has show that depression and a poor quality of life can lead to shorter survival for patients with metastatic lung cancer, so it makes sense that when the palliative care improved patients' moods and quality of life, a greater relative survival rate followed. What's more, the study hypothesized, by being referred to hospice care earlier in their treatment, patients "may receive care that results in better management of symptoms, leading to stabilization of their condition and prolonged survival."
What is our first impulse when confronted with the fear, shock and grave anxiety that comes with a terminal diagnosis? Action. The human impulse to do is overwhelming--treat, cut, defy, cure.
Conversations about hope and options do not easily rise to the top of the priority list. But nothing could be more consequential to one's quality of life and death. What level of medical intervention is desired when life is limited? What level of physical compromise is acceptable? What are your priorities? These are questions that must be discussed--among patients, their physicians and their loved ones--when life is limited.
In a riveting recent New Yorker article on hospice, the author and surgeon Atul Gawande confesses that even doctors avoid these difficult conversations and admits to his own personal and professional awakening on the subject. He recounts the story of a friend of his, herself an expert on end-of-life care, who had to force herself to have such a conversation with her own seriously ill father. By asking him "What level of being alive is tolerable to you?" and hearing his surprising answer--to be able to eat chocolate ice cream and watch the football game--she was able to help him navigate his most consequential medical decisions as he battled what turned out to be a terminal illness.
When you or a loved one are facing a terminal diagnosis, what questions should you discuss? I recommend starting with these three:
- What is most important to you now?
- What are you most concerned about?
- Who knows your medical care preferences and can speak for you if you cannot speak for yourself?
You must also ask questions of your (or your parent's or spouse's) physician, including these:
- How can I be sure that you and the medical team will honor my wishes for care?
- Will you let us know when treatments are becoming less beneficial?
- What role might palliative care have in my treatment plan?
The importance of holding honest end-of-life conversations resounds even beyond a patient's death. Caregivers who had the all-important discussion with their terminally ill loved one reported less depression during bereavement than those who had not had such conversations, according to a 2008 study in the Journal of the American Medical Association.
Thanks to the New York Palliative Care Information Act, many more New Yorkers and their families will now be having these conversations.
Please continue the conversation. Let us know how you handled--or avoided--end-of-life discussions with a loved one and what the outcome was.
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