Despite all our activities to reduce our population risk of disease and death, illness, suffering and death eventually come to all of us. This post is about what resources you can draw on when illness and suffering happen to your loved ones. The terms palliative care and hospice are often misunderstood. Hopefully after reading this post you will be clear about what these terms mean and how you can use services that provide either or both palliative care and hospice to reduce suffering in your loved ones who have serious illness or are approaching the end of their lives.
Palliative Care
Many people think of palliative care as end of life care. That is a misconception. Palliative care aims to reduce suffering in anyone who has a serious illness, even if they are likely to recover. Palliative care specialists are available in most hospitals and in some areas will do home visits. Palliative care can improve quality of life and can help patients understand their choices for medical treatment. Palliative care services may be helpful to any older person having a lot of general discomfort and disability very late in life. People receiving palliative care can continue other treatments such as chemotherapy for cancer, surgery, or any other potentially curative treatment.
Palliative Care Team
There is usually a palliative care team made up of one or more palliative care specialist doctors and may also include nurses, nutritionists, social workers, chaplains and physical therapists.
Palliative Care Example
Mrs S.is a 75 year old woman who lives alone. She has recently been diagnosed with ovarian cancer. She has a good chance of cure with chemotherapy and she has decided to agree to chemotherapy. Her doctor recommends palliative care during her chemotherapy to help her with pain, fatigue, loss of appetite. The nutritionist on the team helps her find foods that she can eat and monitors her weight. The palliative care specialist helps with medicines to manage her pain to keep it at a tolerable level. The social worker on the team helps find volunteers to do her grocery shopping when she is too tired to go herself. The physical therapist on the team helps her with balance and does a home assessment to decrease her risk of falling. The chaplain on the team calls her periodically and visits as needed to help her deal with the emotional pain of her illness.
Palliative Care Resources
Here is a link to a website that lets you put in your address to find palliative care resources in your area: Palliative Care Provider Directory.
Hospice
Hospice provides comfort care at the end of life. It is available if a physician certifies that death is likely to occur within 6 months. Hospice services make the end of life much more comfortable for almost all patients. Unfortunately many people do not access hospice services until days before death. More than half of Medicare patients who are eligible for hospice received hospice care less than 30 days before they died. One fourth of these die within a week of beginning hospice.
There are many reasons why families tend to delay seeking hospice benefits. Here is a link to an excellent website that discusses reasons why families delay and that also describes how hospice helps people nearing the end of their lives: Why Family Members Wait Too Long to Call Hospice.
Hospice Benefits
Hospice covers all medicines needed for comfort including pain medicines. Hospice also covers certain medicines for chronic disease like blood pressure and diabetes medicines, since stopping these could increase patient discomfort. Hospice also covers hospitalizations for certain acute illnesses or injuries where hospitalization is necessary for patient comfort. Hospice is almost always delivered by a team that may include a physician, nurse, hospice aide, social worker, volunteer, chaplain, and bereavement specialist.
Hospice Eligibility
People who are undergoing curative care are eligible for palliative care, but not hospice. People who have a projected life span of 6 months or less are eligible for hospice. If a person lives longer than 6 months, that does not mean hospice benefits are terminated. If the person still has a projected lifespan of 6 months, hospice benefits continue no matter how long they actually live. If the prognosis improves to the point that the projected lifespan is more than 6 months, then that person is no longer eligible for hospice. If the prognosis worsens again, then hospice benefits are available again. For Medicare, at least, hospice benefits are never exhausted, no matter how many times a person goes on and off hospice.
For people who do not have Medicare, private insurance usually pays for hospice care. Medicaid also pays for hospice care.
Who delivers hospice care?
In rural areas there may be only one hospice provider, but in most areas of the country there are several different agencies that provide hospice care. Although they all have to provide the same basic services, there are differences between providers that make a difference to hospice patients and their families. Your doctor may recommend a hospice provider, but there are some important questions to ask the hospice provider. Here is a link to the Hospice Foundation of America website that gives advice about how to choose a hospice provider and what questions to ask: How to Choose a Hospice Provider.
Hospice Example
A 93 year old man living with his daughter has gotten progressively more frail and with mild dementia. He cannot perform activities of daily living such as toileting, bathing and dressing. His doctor certifies that he is likely to die within the next 6 months, so he qualifies for hospice care. Because of the excellent care he gets from hospice, his condition improves and hospice care is discontinued. He also has congestive heart failure, and over time this gets much worse. He again qualifies for hospice, and the same agency takes care of him again until his death about 8 months later at age 94.
Bottom Line
Palliative care and hospice are not the same thing. Palliative care focuses on comfort for people with serious diseases even when those diseases are curable. Hospice care is end of life care and is a Medicare benefit. It is available for people who have a probability (not certainty) of dying within 6 months. Both palliative care and hospice are seriously underused by people who could benefit from them.