Patient-Centered Care: Bringing Quality Toward End of Life

Today we're going to start out talking a little bit about the history of hospice and PT. We will define palliative care and hospice care and discuss the difference between the two. We will discuss who qualifies for each and how. How long can a patient receive this type of care? What is considered curative medical treatment? What is an appropriate referral? What assessment tools might you choose for this patient population that might be different than other patient populations that you're familiar with. We will discuss how to develop your PT plan of care, as you're constantly reassessing these types of patients and possibly alternating your plan of care. I have 12 cases at the end that are all patients I have seen in hospice and or palliative care. We'll talk about the plan of care I developed for them and how we brought quality to the end of each one of their lives. 

Hospice care is directed at symptom control, not controlling the disease process itself. The rules and regulations for inpatient care are flexible. You could have a hospice patient that's in acute care, skilled nursing, home health, or assisted living. There are many places where you could see that hospice patient and you follow them wherever they go if their setting changes based on their needs and the ability of their caregivers. You can go to multiple different places to see that patient. What's nice about hospice care is visitors are allowed. If they're in a hospice inpatient unit, visitors can come at any time, 24 hours a day. They can bring whatever food they want and can bring children or pets. It's kind of like being in their home, so they're allowed to make the setting much more personalized.

Hospice kind of falls under palliative care, but palliative care is for anyone living with a serious illness, such as heart failure, chronic obstructive pulmonary disease (COPD), cancer, dementia, Parkinson's disease, and many others. Palliative care can be helpful at any stage of the illness, not just at the end of the illness, and is best provided from the point of diagnosis. It's designed to improve the quality of that patient's life, helping them with symptoms or side effects they're having from active treatment and helping them make choices in that medical treatment. Palliative care can be provided when people are getting curative treatment, such as chemotherapy, radiation, or blood transfusions, and does not depend on their prognosis.

We're going to go back in time a little bit and talk about where hospice came from, who started it, and when modern hospice came about so you can get an understanding of where it started and where we are now, especially in our American Healthcare system. Hospice first began when shelter was offered to the sick and tired. The history of hospice care dates back to medieval times when strangers offered their "hospitality" to travelers. However, the first modern hospice didn't appear until the late 1960s in a residential suburb in London. Drawing attention to the various stages of the terminally ill, many doctors and caregivers of today still push for improvements in hospice care. 

 

During the 1800s, a hospice was formed in France by widows of husbands with cancer to offer care for the terminally ill. At the same time, a similar institution was formed by the Irish Sisters of Charity. Hospice has been talked about for a long time, but modern hospice is really not as old as many of you would have thought. About 50 years ago, this same religious organization started St. Joseph's Hospice in London. Many additional facilities were developed under the guidance of the Anglican and Methodist Churches.

 

The primary patient population at that point was patients with cancer and other diagnoses, such as tuberculosis of the bone. Physician Dame Cicely Saunders established the first hospice in modern times (St. Christopher's) in 1967 and started using the term hospice care to signify specialized treatment given to dying patients. In 1969, Dr. Elisabeth Kubler-Ross used more than 500 interviews with patients who were terminally ill to write the book, "On Death and Dying" to further enlighten people about the concept of hospice care.

 

Most of the history we've heard so far was in Europe. In the United States, the first hospice wasn't developed until the 1970s as it was a volunteer service to provide care and support for people with terminal illnesses, most often cancer. While originally the aim of palliative medicine was limited to the treatment of malignant disease, now we see many other non-cancer diagnoses are also addressed. The National Hospice Foundation was not established until 1992, so that is really quite recent.

We talk about Medicare in the history of hospice because generally the rules that Medicare puts in place for their patients and coverage are followed by private insurance. Medicare started its benefit of hospice in 1983 to provide a program for patients with a life expectancy of fewer than six months who no longer wanted curative treatment. At that time, the benefits included physician care, nursing care, a social worker, physical therapy, occupational therapy, speech therapy, a home health aide, and volunteer services. It also included any medication the patient might need and any durable medical equipment that we would order for a patient to make them as functional and comfortable as they could be. Again, Medicare and Hospice are not as old as you may have thought.

Let's get into the definition of hospice care. I included a Medicare and Medicaid Services³ definition because they tend to set the standard and then private insurance follows suit. They define hospice care as an approach to caring for the terminally ill individual that provides palliative care rather than traditional medical and curative type treatments. It allows the patient to stay at home for as long as possible by providing support to the patient and family, and by keeping the patient as comfortable as possible while maintaining his or her dignity and quality of life. It uses an interdisciplinary approach to deliver medical, social, physical, emotional, and spiritual services through the use of a broad spectrum of caregivers. These services assist not only the patient but their family at the end of life. So, hospice is not just for the patient. It's for their family and their caregivers to help them all go through the process.

 

Hospice is not just something in the United States. We see a lot of research coming from other countries in the world. The World Health Organization (WHO)⁴ has its own definition and it is very similar. Hospice care is end-of-life care provided by health professionals and volunteers. They give medical, psychological, and spiritual support. Again, the goal is dying with peace, comfort, and dignity. Caregivers will try to control pain and other symptoms so the person can remain as alert and comfortable as possible. We've seen, especially in the last few years, that hospice is not using as much morphine and high-level medications so the patient can be as alert as they'd like to be. When they come into hospice there is a discussion about how alert they want to be at the end. This allows the caregivers to give them medications to make them comfortable, but also keep them as alert as they would like to be. Again, the World Health Organization also includes the patient's family in the care that they provide.

 

Medicare and Medicaid Services⁵ define palliative care as well, which is also looking at the quality of life and is similar to hospice. It improves the quality of life for patients, making the patient as comfortable as possible by anticipating, preventing, diagnosing, and treating their symptoms as opposed to trying to cure the illness itself. This may be done through chemotherapy, radiation, blood transfusions, etc. Palliative care can incorporate psychological, social, and spiritual support for patients and for families. Although palliative care is sometimes conflated with hospice care, palliative care is not limited to patients with terminal illnesses. It can be patients who are having a lot of side effects or symptoms that are affecting their quality of life. Palliative care will be brought in to assist with that and to make things easier on the patient and their family.

 

The World Health Organization⁴  has a similar definition of palliative care. They define it as an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care provides relief from pain and other distressing symptoms and affirms life and making that quality of life the best it can be. It also regards dying as a normal process. It intends neither to hasten nor postpone death at all. Again, it integrates the psychosocial and spiritual aspects of patient care, whichever things are most important to that patient. It's very patient-and-family-centered. 

 

It offers a support system to help patients live as actively as possible until death and to help the family cope during the patient's illness and in their own bereavement after their death. They often follow them for bereavement services for six months, some even a year. It uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated. This team may include rehab professionals, nurses, physicians, social workers, or a spiritual person who is important to the family. Some families choose to provide their own spiritual person.

 

Remember, the goal is always enhancing quality of life and positive influence through the course of the illness. Palliative care is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

Hospice care is covered under Medicare Part A (hospital insurance). You are eligible for Medicare hospice benefits when:

Medicare covers the following:

Medicare does not cover treatment to cure your terminal illness. People have to opt to stop the active or curative treatment to sign up for hospice. They cannot get care from more than one hospice at a time. The care from another provider is the same care as your hospice. You can't get duplicate care such as home health and hospice at the same time. When you decide to sign up for hospice, you're no longer in traditional home health. You slide over to hospice care. But hospice doesn't always equal people with cancer.