End of Life: Helping with Comfort and Care
Care Options at the End of Life
- Palliative Care
- Who Can Benefit from Palliative Care?
- Some Differences between Palliative Care and Hospice
- What Does the Hospice 6-Month Requirement Mean?
- The Doctor Wants to Move My Relative to the ICU. What Can We Expect?
- Nursing Homes
- Who Pays for Care at the End of Life?
- Questions to Ask about End-of-Life Decisions
- To Learn More about Care Options at the End of Life
Death does not sound a trumpet.
— African proverb
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. Hospice can be provided in any setting—home, nursing home, assisted living facility, or inpatient hospital (see Hospice).
There is no right place to die. And, of course, where we die is not always 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 how they will pay for it. In this section, we explain some of the care options available to people at the end of life.
Doctors can provide treatment to seriously ill patients in the hopes of a cure for as long as possible. These patients may also receive medical care for their symptoms, or palliative care, along with curative treatment.
A palliative care consultation team is a multidisciplinary team that works with the patient, family, and the patient’s other doctors to provide medical, social, emotional, and practical support. The team is made of palliative care specialist doctors and nurses, and includes others such as social workers, nutritionists, and chaplains.
Palliative care can be provided in hospitals, nursing homes, outpatient palliative care clinics and certain other specialized clinics, or at home. Medicare, Medicaid, and insurance policies may cover palliative care. 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. Check to see if insurance will cover your particular situation.
Adriana developed anemia while she was being treated for breast cancer. A palliative care specialist suggested she get a blood transfusion to manage the anemia and relieve some of the fatigue she was experiencing. Controlling her symptoms helped Adriana to continue her curative chemotherapy treatment. Treating her anemia is part of palliative care.
In palliative care, you do not have to give up treatment that might cure a serious illness. Palliative care can be provided along with curative treatment and may begin at the time of diagnosis. Over time, if the doctor or the palliative care team believes ongoing treatment is no longer helping, there are two possibilities. Palliative care could transition to hospice care if the doctor believes the person is likely to die within 6 months (see What does the hospice 6-month requirement mean? for more about this timeframe). Or, the palliative care team could continue to help with increasing emphasis on comfort care.
Tom, who retired from the U.S. Air Force, was diagnosed with lung cancer at age 70. As his disease progressed and breathing became more difficult, he wanted to explore experimental treatments to slow the disease. Through the palliative care provided by the Veterans Health Administration, Tom got treatment for his disease and was able to receive the care and emotional support he needed to cope with his health problems. The palliative care program also helped arrange for assistance around the house and other support for Tom’s wife, making it easier for her to care for him at home. When the experimental treatments were no longer helping, Tom enrolled in hospice. He died comfortably at home 3 months later.
At some point, it may not be possible to cure a serious illness, or a patient may choose not to undergo certain treatments. 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.
Like palliative care, hospice provides comprehensive comfort care as well as support for the family, but, in hospice, attempts to cure the person’s illness are stopped. Hospice is provided for a person with a terminal illness whose doctor believes he or she has 6 months or less to live if the illness runs its natural course.
Hospice is an approach to care, 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 someone is always available by phone—24 hours a day, 7 days a week. Hospice may be covered by Medicare and other insurance companies; check to see if insurance will cover your particular situation.
Choosing hospice does not have to be a permanent decision. For example, Dolores was 82 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 Dolores began hospice care. A week later, she learned that her granddaughter was pregnant. After talking with her husband, Dolores changed her mind about using hospice care and left to begin dialysis, hoping to one day hold her first great-grandchild. Shortly after the baby was born, the doctors said Dolores' blood pressure was too low. At that point, she decided to re-enroll in hospice.
It is important to remember that stopping treatment 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. Other medical care may continue as long as it is helpful. For example, if the person has high blood pressure, he or she will still get medicine for that.
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Although hospice provides a lot of support, the day-to-day care of a person dying at home is provided by family and friends. The hospice team coaches family members on how to care for the dying person and even provides respite care when caregivers need a break. Respite care can be for as short as a few hours or for as long as several weeks.
Annie and Maria’s Story
Eighty-year-old Annie had advanced metastatic melanoma and asked for help through a hospice program so she could stay in the home she had lived in for more than 40 years. After Annie died, hospice continued to support her family, offering bereavement counseling for a year. Hospice services greatly reduced the stress of caregiving for Annie’s family. This was especially true for Annie’s wife, Maria, who weathered the sadness of her loss without her own health declining.
Families of people who received care through a hospice program are more satisfied with end-of-life care than are those of people who did not have hospice services. Also, hospice recipients are more likely to have their pain controlled and less likely to undergo tests or be given medicines they don’t need, compared with people who don’t use hospice care.
Omar is 64, lives at home, and has a history of congestive heart failure. He has decided that no matter what, he wants the doctor to do everything medically possible to extend his life. Those closest to Omar agree. One night, Omar wakes up with chest pain and is taken to the hospital, where doctors and nurses are available around-the-clock. Hospitals offer a full range of treatment choices, tests, and other medical care. If Omar’s heart continues to fail, he can receive care in the intensive care unit (ICU) or coronary care unit (CCU).
Although hospitals have rules, they can sometimes be flexible. If Omar’s doctor thinks he is not responding to treatment and is dying, the family can ask for relaxed visiting hours. If Omar’s family wants to bring personal items from home, they can ask the staff if there are space limitations or if disinfection is needed.
In a hospital setting, medical professionals are available who know what needs to be done for someone who is dying. This can be very reassuring. In addition to the regular care team, some hospitals may have palliative care teams (see Palliative Care) that can assist with managing uncomfortable symptoms and making medical decisions for patients who may or may not be at the end of life.
More and more people are in nursing homes at the end of life. In a nursing home, nursing staff are always present. Unlike a hospital, a doctor is not in the facility all the time, but may be available by phone. Plans for end-of-life care can be arranged ahead of time, so when the time comes, care can be provided as needed without first consulting a doctor.
If the person has lived in the nursing home for a while, the staff and family probably already have a relationship. This can make the care feel more personalized than in a hospital. Additionally, if the person is enrolled in hospice (see Hospice), the hospice team will be available to assist nursing facility staff with end-of-life care.
As in a hospital, privacy may be an issue in nursing homes. You can ask if arrangements can be made to give your family more time alone when needed.
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 caregivers are willing to take on. Hiring a home nurse is an option for people who need additional help and have the financial resources.
Talk with your healthcare provider about the kind of care needed. Frequently, this care does not require a nurse but can be provided by nursing assistants or family and friends without medical training.
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; make sure you check with your insurance company before ordering.
Work with the doctor to decide what is needed to support comfort care at home. If the seriously ill 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 To Learn More about Care Options at the End of Life to find out 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. Hospice is frequently used to care for people who are home at the end of life.
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.
- If we continue the current course of treatment, what do you expect will happen next?
- 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 we get help paying for respite care?
- Is there a good chance that treatment in an intensive care unit will reverse the dying process, or instead draw it out?
Some resources to help you learn more about care options at the end of life:
Centers for Medicare & Medicaid Services
www.medicare.gov/Pubs/pdf/02154.pdf (PDF, 2.0 MB)
Department of Veterans Affairs
Hospice Foundation of America
To Contact Your Area Agency on Aging:
Publication Date: July 2016
Page Last Updated: May 2, 2017