Never before have I seen so much discussion about health care in this country. That's a good thing. It can empower Americans to make more informed health care decisions for themselves and their loved ones, from the beginning to the end of life.
As we seek to better understand options at all stages of life, it seems a good time to address some lingering myths and misunderstandings about hospice and palliative care. As director of Visiting Nurse Service of New York Hospice Care (VNSNY), I've seen first-hand how profoundly such care can improve the quality of life for individuals and families when time is limited. And I've also seen how misinformation and misconceptions can keep people from using these vital services to their fullest.
To begin, a few key points. Hospice is a program that provides care for the terminally ill at home or in a facility. Hospice care involves a team-oriented approach that addresses the medical, physical, social, emotional and spiritual needs of the patient, as well as providing bereavement support to the family. Hospice, which is covered by Medicare and commercial insurance, is available when the patient's physician determines that further treatment will not cure or reverse the disease, and that the disease at its current stage typically claims life within six months. The care that hospice provides is palliative, focusing on relieving pain and other symptoms but not seeking to cure the disease.
MYTH #1: Hospice and palliative care mean that I am giving up.
According to this myth, when you sign on for hospice care you sign away your rights to just about everything -- medical treatment, your personal physician, your ability to make decisions. Some may believe that palliative care allows for only morphine drip.
REALITY: Nothing could be further from the truth.
Patients in hospice have a robust array of treatments available to them, aimed at managing their symptoms and enhancing their quality of life. Hospice helps patients 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.
Recently, a Staten Island hospice patient with end-stage cancer found her arms and legs growing numb, an uncomfortable and disconcerting condition. A hospice nurse alerted the patient's doctor, who took an MRI to rule out new tumor growth and then prescribed medication -- which has made her far more comfortable. Hospice care can involve such palliative treatments as low-dose chemotherapy or radiation in service of extending life, reducing tumor size and providing comfort. It does not, however, involve aggressive and experimental treatments, or other therapies aimed at curing or reversing the disease.
Palliative care -- or focusing on the treatment of symptoms -- not only enhances quality of life, but it can also help patients live longer. A recent study published in the New England Journal of Medicine confirms what many of us in hospice have long suspected: that palliative care is good medicine. The study 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.
This study is a powerful rebuttal to the misconception that choosing hospice and palliative care is tantamount to giving up.
MYTH #2: My family and my doctor will know what I want when the time comes.
This is a common myth that people use to avoid one of life's most difficult -- and most important -- conversations: what to do at the end of life, particularly when you are no longer able to speak for yourself.
(This myth can take many forms, including: Talking about death will make it happen.)
REALITY: I have seen countless cases where the families or physicians do not know what a patient wants, specifically because the conversation has never taken place.
I've heard adult children make excuses to put off the conversation: Oh, Mom, you're going to live forever. Or the opposite, an adult child who wants to have the difficult conversation but a parent who cannot face it. In addition, many cultures -- such as the Chinese -- hold deep-seated taboos against talking about death, which I explored in a previous post.
These conversations only grow more difficult -- if not impossible -- in the emergency room, in the back of an ambulance, in crisis. Carve out time to talk about designating a health care proxy and specifying the medical interventions that the patient does and does not want, such as ventilators, feeding tubes and extreme measures.
The other day, I talked with a patient who told me she wanted to "die consciously." She would tolerate the pain, she said, in order to be present in the experience and with her family. Other patients prefer to be pain-free, even if that means sedation. How many of us know our loved ones' wishes on this subject? This is another vital part of the end-of-life conversation.
Navigating these conversations, by the way, is glaringly absent from medical training. Over the weekend, I talked to a bright young family-practice physician, a woman in her thirties, who told me she received no medical training at all about how to talk to her patients who are not going to get better. This reminded me of physician and writer Atul Gawande's poignant, must-read article in the New Yorker, about end-of-life care and conversations.
Thankfully, there are advances. The New York legislature recently passed a law requiring all physicians in the state to offer information on palliative care to patients diagnosed with terminal illness. Although apparently some physicians find the measure "heavy handed," as Jane Brody recently wrote in The New York Times, The New York Palliative Care Information Act does not require any action from physicians beyond the providing of information for end-of-life care options. As Brody clarifies, "This law is not about ending a patient's life. Rather, it is intended to make the end, when that end is near, as physically and emotionally painless as possible."
The importance of having 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.
MYTH #3: If I choose hospice, I'll have to give up my own doctor(s).
REALITY: This is never true. Patients in hospice care remain under the care of their own physician or physicians, who work with the patient, family and the hospice team to enhance quality of life and ensure that the patient is as comfortable as possible, day in and day out. Our hospice team includes full-time physicians board-certified in hospice and palliative care, nurses, social workers, bereavement counselors and a multi-denominational staff of spiritual care counselors, as well as dietitians, home health aides and therapists who specialize in complementary medicine.
A key tenet of hospice care is that one's final months are a continuous part of life's journey. Why on earth would such a model of care remove a patient from his or her doctor, who has been such a vital anchor in that journey?
MYTH #4: Hospice is a place.
REALITY: Hospice is a model of care delivered primarily in the patient's home, operating under the belief that people would prefer to die as they lived.
For those with no family at home to support them, VNSNY has the small, home-like Goodman Brown Hospice Residence on Manhattan's Upper East Side. And for those in hospice care who need medical attention beyond the home, we have the VNSNY Haven Hospice Specialty Care Unit, located within Bellevue Hospital. However, the vast majority of our more than 700 current hospice patients are cared for at home.
MYTH #5: Hospice is only for people with cancer.
REALITY: Hospice is available for patients with any condition that their physician believes will claim life within six months. Our patients include those with illnesses such as cancer, congestive heart failure, emphysema, end-stage dementia and AIDS.
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The end of life is a part of life we will all have to navigate eventually. The more we dispel its myth, mystery and misconception -- in favor of information, knowledge and insight -- the better off we'll be. Here are several places to gather more information on hospice, palliative care and end-of-life decisions:
- The National Hospice and Palliative Care Organization, a national clearinghouse
- Consumer information from the National Association for Home Care & Hospice
- Facts & statistics from the Hospice Association of America
- Resources on advance directives, or, making your end-of-life wishes known
- Pallimed, a hospice and palliative medicine blog
- VNSNY blogs on grief and bereavement