Hospice care offers end-of-life comfort and support; it works best if you think about it ahead of time.
Most of us have an opinion about what constitutes good care for ourselves and our loved ones at the end of life—and, despite American cultural diversity, research shows that most of us have similar opinions. We want to be as independent as possible and to have our values and preferences respected. According to a report published in 2003 by the Hastings Center, a bioethics research institute ("Access to Hospice Care: Expanding Boundaries, Overcoming Barriers"), most Americans would like to die peacefully at home, surrounded by people they care about. We also share common fears of suffering in pain, losing control, being a burden to others, and being abandoned.
In the 1970s, when a rising number of terminally ill people were dying alone in hospitals, these hopes and fears gave impetus to the adoption of hospice care in the United States. The philosophy of hospice is that everyone has the right to die free of pain and with dignity, and that families should be supported in helping to make this possible. Hospice programs are equipped to provide quality care to the dying and support for their families and caregivers. Their services can be especially important to women, who shoulder most of the burden of caregiving and often must help an aging parent or other relative make arrangements.
The hospice movement has not grown as fast as one might expect, given the seemingly universal appeal of its philosophy. The Hastings Center analysis cited several reasons why many of us still die without the medical, nursing, social, and spiritual services that hospice can provide. Some of the barriers are overt, such as the laws and policies that affect financing and delivery of hospice care. Others are subtle, such as the attitudes of both patients and doctors toward death and dying. A major impediment is lack of information.
Here we offer an introduction to the basics of hospice and a physician's perspective on starting the conversation about end-of-life care (see "A doctor talks about hospice").
What hospice programs can do
Manage pain and symptoms.
Provide drugs, medical supplies, and equipment.
Teach family members how to care for their loved one.
Offer short-term hospital care if symptoms become too difficult to manage at home or the caregiver needs a break.
Help the dying person with emotional and spiritual aspects of death.
Deliver special services like speech and physical therapy.
Provide bereavement care and counseling to family and friends.
Source: National Hospice and Palliative Care Organization, www.nhpco.org.
The hospice care approach
When a cure is no longer possible, hospice care can enable patients to maintain a good quality of life and to die with dignity. Symptoms are managed so that the dying person can spend his or her last days alert and comfortable, surrounded by loved ones. This kind of care is called "palliative," meaning "comfort giving," as opposed to curative. It is directed at treating symptoms like physical pain, nausea, mental confusion, and breathing difficulties.
The distinctive feature of hospice care is the coordination of medical, psychological, and spiritual support for both dying persons and their families (see "What hospice programs can do," above). By law, hospice programs must also provide bereavement counseling for up to a year. The Medicare hospice benefit, which in many respects sets a national standard, covers up to 13 months of bereavement counseling.
Most hospice programs are run by independent nonprofit organizations. Some are affiliated with hospitals, nursing homes, or home health agencies, and some are for-profit institutions. Hospice care is available in hospitals, skilled nursing facilities, and specialized hospice centers, but most of it is provided in the home, with a family member as the main caregiver.
Like many other forms of medical care, hospice takes a team approach. But unlike hospital intensive care or trauma units, hospice teams can offer a range of care. The team may include not only doctors and nurses, but also members of the clergy; social workers; psychologists; speech, physical, and occupational therapists; home health aides; and trained volunteers, as well as family and friends.
Evaluating a hospice program
In choosing a hospice program, you should ask a variety of questions, including these:
What services are available to the patient and family members?
How involved are family members in providing care?
What is the role of doctors, nurses, and other health professionals?
Who will be on the hospice care team, and how are they trained, screened, and managed?
How will pain and other symptoms be managed?
If there's a change in the person's condition or circumstances, can services be moved to another setting (hospital, home, or nursing facility, for example)?
Are bereavement services available and for how long?
How is the program accredited, reviewed, and licensed? Is it Medicare-certified?
How does the hospice handle payment and billing? (Be sure to get all financial arrangements—costs, payment procedures, and billing—in writing.)
Medicare coverage for hospice
Physician services; nursing care; medical equipment such as wheelchairs or walkers; supplies such as bandages and catheters; drugs for symptom control and pain relief; short-term care in a hospital, including respite care; home health aide or homemaker services; physical, occupational, and speech therapy; social worker services; dietary counseling; counseling to help the patient and family with grief and loss.
Medicare does not cover:
Treatment to cure the terminal illness; charges for room and board for hospice care in your home or a hospice facility; medications, treatment, equipment, or transportation not authorized in advance by hospice.
Note: Hospice is covered under Medicare Part A (hospital insurance).
When does hospice care begin?
Most health insurers and hospices have adopted the Medicare eligibility rules, which require certification from a physician that the patient will not benefit from further curative treatment and has a life expectancy of no more than six months if the illness runs its normal course.
The six-month rule, now fairly standard, works well enough for cancer, which usually has a distinct terminal phase. The rule is harder to apply, and hospice care more difficult to arrange, when the course of the illness is less predictable and life expectancy is uncertain—as in organ failure, general frailty, or Alzheimer's disease.
Nevertheless, it's important to bring up the possibility for the sake of both the patient and the family. Everyone needs time to discuss the matter and perhaps consult physicians, insurers, and others before deciding whether, when, and where to arrange for hospice care. Some physicians will suggest hospice care relatively early on, but others delay—sometimes until it's too late to get the full benefits (see "A doctor talks about hospice"). So families and patients may need to raise the issue themselves and seek information on their own.
End-of-life matters are too weighty to put off until death is imminent. But, according to the National Hospice and Palliative Care Organization, the average length of hospice care in 2003 was barely three weeks. Only 1 hospice patient in 14 received care for 6 months or longer, and more than a third received it for a week or less. These figures are significant, because short-term care means the patient and family have less time to prepare for death.
Who pays for hospice?
Hospice care is covered by most private health insurers, health maintenance organizations (HMOs), and other managed care plans—including Blue Cross, Blue Choice HMO, the Department of Veterans Affairs, Medicare, and Medicaid. Many hospice programs will provide care even for patients who have insufficient or no insurance. Home-based hospice care usually costs less than hospital or nursing care, of course, because it requires less professional help and little high-tech equipment.
In a Medicare-certified hospice program—and most hospice programs are Medicare-certified—Medicare pays for almost everything. The only exceptions are small co-payments for medications and some respite care. Medicare covers almost all of the 80% of hospice patients who are 65 or over. Younger patients may also be eligible if they meet certain conditions—for example, if they've qualified for Social Security disability benefits for at least two years, have amyotrophic lateral sclerosis (ALS), have had a kidney transplant, or need regular dialysis.
On the understanding that terminal illnesses aren't entirely predictable, Medicare continues to pay benefits even if the patient lives longer than six months. If the illness goes into remission or improves, a person can be discharged and return to hospice at a later time. Patients can also receive standard Medicare coverage if they halt hospice care and resume regular medical treatment.
Why choose hospice care?
There are many reasons for choosing hospice care. It allows people to end their lives as comfortably as possible, surrounded by family and friends. Home-based hospice gives patients and their families a greater sense of control than a hospital allows. And hospice places a much greater emphasis on the spiritual and emotional aspects of dying. That's why it has become the choice of increasing numbers of the dying and their families.
A Doctor Talks About Hospice Celeste Robb-Nicholson M.D.
Doctors and hospice experts agree that terminally ill patients should be in hospice care for at least three months before death. This allows the patients and their families to get to know and trust the hospice team and take advantage of the services it provides. It also allows the hospice team to get to know the patient. Unfortunately, doctors often don't refer patients to hospice, or delay referring them until shortly before death. This is one of the chief reasons hospice care is not used enough.
Why do doctors wait so long, or fail altogether, to discuss the matter? For one thing, we are trained to prolong life. We're committed to conquering disease, and some of us may regard it as a medical failure when we have to refer a patient to hospice.
There are also practical problems. It can be difficult to predict that a patient has six months or less to live, and some doctors don't understand that they don't have to be precise in making this prognosis. When asked why they delay referring patients to hospice, many doctors say they don't want to take away the patient's hope. They also fear losing contact with the patient, especially when doctors don't realize that they can and should be a part of the hospice team.
Patients and their families don't like to talk about hospice either. In a survey by the National Hospice and Palliative Care Organization, a significant number of respondents said they would not discuss death-related issues with a parent even if the parent had less than six months to live. Conversely, terminal patients sometimes try to protect their families from painful news. For both patients confronting major illness and their families, it can be difficult to think about anything but a cure. Some patients equate entering hospice care with giving up.
Because hospice programs usually forgo life-prolonging treatments, some patients have the mistaken impression that they withhold care. On the contrary, hospice workers are trained to remedy and control many symptoms that make the end of life painful or frightening. And patients can always leave hospice to pursue other treatment and return if they wish.
Many patients fear that physicians and medical teams will abandon them if they choose hospice. They may not understand that by enrolling in hospice they actually gain access to an enormous number of medical, nursing, psychosocial, and spiritual resources. Some families feel that enrolling a loved one in a hospice program amounts to betrayal or abandonment. They may fear managing death at home because they do not realize that hospice will involve them in providing care and ensuring a peaceful death.
It's not an easy decision. Patients and families should never feel compelled to choose between care that extends life and care that provides comfort. However, those who have chosen the latter should be thinking about hospice sooner rather than later. According to a survey conducted by the National Hospice Work Group, the most common question hospice consumers ask is, "Why didn't we know about this sooner?"
Our duty as physicians is to help our patients discover what's good for them, and one way we can do that is by providing information about hospice care. If your doctor doesn't start the discussion, consider starting it yourself. You may find that it allays fears about the end of life and goes a long way toward building the sort of trusting relationship among you, your family, and your physician that becomes very important at the end.
Centers for Medicare and Medicaid Services877-267-2323 (toll free) www.cms.hhs.gov/medlearn/refhospice.asp
Hospice Association of America202-546-4759 www.hospice-america.org
Hospice Foundation of America800-854-3402 (toll free)www.hospicefoundation.org
National Hospice and Palliative Care Organization703-837-1500www.nhpco.org