Finding Care at the End of Life
National Institute on Aging
Decades ago, most people died at home, but medical advances have changed that. Today, most Americans are in hospitals or nursing homes at the end of their lives. Some people enter the hospital to get treated for an illness. Some may already be living in a nursing home. Increasingly, people are choosing hospice care at the end of life.
There is no “right” place to die. And, of course, where we die is not usually something we get to decide. But, if given the choice, each person and/or his or her family should consider which type of care makes the most sense, where that kind of care can be provided, whether family and friends are available to help, and, of course, how they will manage the cost.
HOSPITALS AND NURSING HOMES
Who pays for care at the end of life?
How to pay for care at the end of life depends on the type and place of care and the kind of insurance. Medicare, Medicaid, private medical insurance, long-term care insurance, Veterans Health Administration (if VA-eligible), or the patient and his or her family are common sources of payment.
See To Learn More at the end of this section for links and telephone numbers for services that are Federal government programs.
George is sixty-four and has a history of congestive heart failure. One night he is taken to the hospital with chest pain. George and those closest to him had previously decided that, no matter what, the doctor should try to do everything medically possible to extend George’s life. So, when George needed care, he went to a hospital, where doctors and nurses are available around-the-clock. Hospitals offer a full range of treatment choices, tests, and other medical care. If George’s heart continues to fail, the hospital intensive care unit (ICU) or coronary care unit (CCU) is right there. Although hospitals have rules, they can sometimes be flexible. If George’s doctor thinks he is not responding to treatment and is dying, the family can ask for relaxed visiting hours. If George’s family wants to bring personal items from home, they can ask the staff if there are space limitations or if disinfection is needed. Whether George is in the ICU, CCU, or a two-bed room, his family can ask for more privacy.
In a hospital setting, there is always medical staff available who know what needs to be done for someone who is dying. This can be very reassuring for that person, as well as for family and friends.
More and more people are in nursing homes at the end of life. In a nursing home, nursing staff is also always present. A nursing home, sometimes called a skilled nursing facility, has advantages and disadvantages for end-of-life care. Unlike a hospital, a doctor is not in the nursing home all the time. But, plans for end-of-life care can be arranged ahead of time, so that when the time comes, care can be provided as needed without first consulting a doctor. If the dying person has lived in the facility for a while, the staff and family have probably already established a relationship. This can make the care feel more personalized than in a hospital. As in a hospital, privacy may be an issue. You can ask if arrangements can be made to give your family more time alone when needed.
The doctor wants to move my relative to the ICU. What can we expect?
The ICU (intensive care unit) and CCU (coronary care unit) are types of critical care units, that is, they are parts of a hospital where more seriously ill patients can benefit from specially-trained staff that have quick access to advanced equipment. The medical staff in ICUs and CCUs closely monitor and care for a small number of patients. Doctors who work in these units are called intensivists.
Patients in the ICU or CCU are often connected to monitors that check breathing, heart rate, pulse, blood pressure, and oxygen levels. An IV (intravenous) tube may supply medicines, fluids, and/or nutrition. Another tube called a Foley catheter may take urine out of the body; a tube through the nose or stomach area may provide nutrition and remove unwanted fluids. A breathing tube through the mouth or trachea (windpipe) may be attached to a ventilator or respirator to help with breathing. Often these external supports—designed to be used for a short time—will maintain vital functions while the body heals.
But sometimes, even with intensive care, the body can’t heal, and organs start to fail. When this happens, survival is unlikely. In this case, the health care team might talk to the family—and the patient if he or she is conscious—about considering whether or not to continue intensive treatment.
Home is likely the most familiar setting for someone who needs end-of-life care. Family and friends can come and go freely. Care at home can be a big job for family and friends—physically, emotionally, and financially. But, there are benefits too, and it is often a job they are willing to take on. Hiring a home nurse is an option for people who need additional help.
In order to make comfort care available at home, you will have to arrange for services (such as visiting nurses) and special equipment (like a hospital bed or bedside commode). Health insurance might only cover these services or equipment if they have been ordered by a doctor. Work with the doctor to decide what is needed to support comfort care at home. If the dying person is returning home from the hospital, sometimes a hospital discharge planner, often a social worker, can help with the planning. Your local Area Agency on Aging might be able to recommend other sources of help (see page 30 to learn how to contact your Area Agency on Aging).
A doctor has to be available to oversee the patient’s care at home—he or she will arrange for new services, adjust treatment, and order medicines as needed. It is important to follow the doctor’s plan in order to make the dying person as comfortable as possible. Talk with the doctor if you think a treatment is no longer helping.
PALLIATIVE CARE AND HOSPICE
Who can benefit from palliative care?
Palliative care is not just for people who might die soon. It is a resource for anyone with a long-term disease that will, in time, probably cause their death. These include heart failure, chronic obstructive pulmonary disease, or Parkinson’s disease. The organized services available through palliative care could also be helpful to any older person having a lot of general discomfort and disability very late in life.
Doctors can provide treatment to seriously ill patients in the hopes of a cure for as long as possible. These patients also receive symptom care or palliative care. For example, in time George developed anemia along with his heart failure. Managing the anemia can improve some of the
symptoms troubling George. It might also make it easier for him to do things like get dressed or bathe on his own. Treating his anemia is part of palliative care.
Recently, the term palliative care has come to mean more than just treating symptoms. In the United States, palliative care now often refers to a comprehensive approach to improving the quality of life for people who are living with potentially fatal diseases. It provides support for family members, very similar to the more familiar concept of hospice care.
In a palliative care program, a multidisciplinary health care team works with both the patient and family to provide any support—medical, social, and emotional—needed to live with a possibly fatal illness. The health care team may be made up of doctors, nurses, therapists, counselors, social workers, and others as needed.
Palliative care can be provided in hospitals, nursing homes, outpatient palliative care clinics, certain other specialized clinics, or at home. Medicare covers some of the treatments and medicine. Veterans may be eligible for palliative care through the Department of Veterans Affairs. Private health insurance might pay for some services. Health insurance providers can answer questions about what they will cover.
In palliative care, you aren’t asked to make a choice between treatment that might cure a terminal disease and comfort care. In time, if the doctor believes the patient is not responding to treatment and is likely to die within 6 months, there are two possibilities. Palliative care could transition to hospice care. Or, the palliative care could continue, with increasing emphasis on comfort care and less focus on medical treatment aimed at a cure.
That is what happened with Jack, retired from the U.S. Air Force, who was diagnosed with chronic obstructive pulmonary disease at age seventy. As the disease progressed and breathing became more difficult, Jack wanted to explore experimental treatments to slow the disease. Through the palliative care provided by the Veterans Health Administration, while receiving treatment for his pulmonary disease, Jack was also able to receive the comfort care and emotional support he needed to cope with his health problems. The palliative care program also provided help around the house and other support for Jack’s wife, making it easier for her to care for Jack at home.
At some point, curative medical treatment may no longer make sense—it might not help or may actually make the patient more uncomfortable. Hospice is designed for this situation. The patient beginning hospice care understands that his or her illness is not responding to medical attempts to cure it or to slow the disease’s progress. The hospice approach to end-of-life care is similar to palliative care, in that it provides comprehensive comfort care to the dying person as well as support to his or her family, but, in hospice, attempts to cure the person’s illness are stopped.
Hospice is an approach to care, and so it is not tied to a specific place. It can be offered in two types of settings—at home or in a facility such as a nursing home, hospital, or even in a separate hospice center. Hospice care brings together a team of people with special skills—among them nurses, doctors, social workers, spiritual advisors, and trained volunteers. Everyone works together with the person who is dying, the caregiver, and/or the family to provide the medical, emotional, and spiritual support needed. A member of the hospice team visits regularly and is always available by phone—24 hours a day, 7 days a week.
Art Buchwald on leaving the hospice:
• I maintained everyone has to die—I still do. The hospice gives a person the opportunity to die with dignity. It provides care, help, and as much comfort as possible.
• In spite of the fact that I’ve been staying in a hospice, I’m not going to heaven immediately. My doctor informs me that I can stop over on Martha’s Vineyard on the way there.
Art Buchwald, Too Soon to Say Goodbye, (New York: Random House, 2006).
It is important to remember that stopping treatment specifically aimed at curing an illness does not mean discontinuing all treatment. A good example is an older person with cancer. If the doctor determines that the cancer is not responding to chemotherapy and the patient chooses to enter into hospice care, then the chemotherapy will stop, but other medical care may continue. For example, if the person has high blood pressure, he or she will still get medicine for that.
Choosing hospice does not have to be a permanent decision. For example, Delores was eighty-two when she learned that her kidneys were failing. She thought that she had lived a long, good life and didn’t want to go through dialysis, so Delores began hospice care. A week later she learned that her granddaughter was pregnant. Delores changed her mind about using hospice care and left to begin dialysis in the hopes of one day holding her first great-grandchild.
Similar to Delores, real-life humorist and Washington Post columnist Art Buchwald, age eighty-one, decided against the kidney dialysis suggested by his doctor. Buchwald entered hospice in February 2006, expecting to die of kidney disease within a few weeks. It was big news when his condition stabilized. When it became clear death was not imminent, Buchwald left hospice. He spent the summer in Martha’s Vineyard and died in January 2007.
Some Differences Between Palliative Care and Hospice
Who can be treated?
Anyone with a serious illness
Anyone with a serious illness whom doctors think has only a short time to live, often less than 6 months
Will my symptoms be relieved?
Yes, as much as possible
Yes, as much as possible
Can I continue to receive treatments to cure my illness?
Yes, if you wish
No, only symptom relief will be provided
Will Medicare pay?
It depends on your benefits and treatment plan
Yes, it pays all hospice charges
Does private insurance pay?
It depends on the plan It depends on the plan
How long will I be cared for?
This depends on what care you need and your insurance plan
As long as you meet the hospice’s criteria of an illness with a life expectancy of months, not years
Where will I receive this care?
• Assisted living facility
• Nursing home
• Assisted living facility
• Nursing home
• Hospice facility
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Eighty-year-old Annie had advanced lung cancer and asked for help through a hospice program, so she could stay in the home she had lived in for more than 40 years. A hospice team helped her family and friends with caregiving and everyday activities. They arranged respite care for Annie’s family—once she went into a facility for a few days to give her husband a break. Respite care can be for as short as a few hours or for as long as several weeks. After Annie died, hospice continued to support her family offering bereavement counseling for a year.
Hospice care was a relief for Annie who didn’t want to be a burden to her relatives in her last days. Hospice services also greatly reduced the stress of caregiving for Annie’s family. In fact, a widow or widower is less likely to die within 18 months after the death of a spouse if that spouse received hospice services. This was true for Annie’s husband who weathered the sadness of her loss without having his health decline. Families of people who received care through a hospice program are also more satisfied with end-of-life care than are those of people who did not have hospice services. Hospice recipients are more likely to have their pain controlled and less likely to undergo tests or be given medicines they don’t need than people who don’t use hospice care.
Before Annie died, she chose to receive hospice care and agreed to give up treatment, such as chemotherapy and radiation, to try to cure her lung cancer. But she continued to receive comfort care and counseling. If Annie had changed her mind, she could have left hospice care and received treatment for her cancer.
Questions to Ask
Choosing among the different options for care at the end of life can be difficult. Here are some questions that might help you determine what is best for you and your family.
How long is this person expected to live? What kind of end-of-life care is needed? Is the most likely caregiver able to give that kind of care? Where would the person who is dying want to have this end-of-life care—a facility or at home, for example? What is the best place to get the type of care he or she wants? Who will pay for this care? Can children, grandchildren, friends, pet, etc., visit whenever they want? Is there a good chance that treatment in an intensive care unit will reverse the dying process, or instead draw it out?