Palliative Care Concepts for the Rehabilitation Professional: Adapting to an Evolving Disease Process

Palliative Care: Definitions and Overview

I'm very pleased to share with you a topic that is a passion of mine, but that is also challenging for the profession, which is related to palliative care. In fact, when I was obtaining my doctorate, I did my dissertation on the role of physical therapy in palliative care. By the end of this presentation, I hope that you will become disciples of palliative care, and that you will work to spread the word of how physical therapy is involved.

The definition of palliative care is “an approach that improves quality of life (QoL) for patients and families facing life-threatening illness.” There's a lot of confusion that palliative care and hospice are the same thing, which is definitely not true. Palliative care, according to the World Health Organization, is “applicable early in the course of the illness.” The patient does not have to be nearing the end of their life to be eligible for palliative care. As a matter of fact, it becomes worse for the patient because they're more hospice-appropriate at that point, as opposed to palliative care.

In palliative care, you can also receive other therapies that are intended to prolong life. You can get radiation or chemotherapy that may not be curative, but would potentially decrease pain or improve quality of life. Finally, palliative care involves holistic prevention and relief of suffering, including pain, physical, psychosocial and spiritual suffering. Again, as we said before, palliative care is often perceived as a transition from active care, like restorative or medical curative care, toward hospice -- but that's not always the case. It also includes patients with life-threatening illnesses, who are not imminently dying but potentially in physical decline, that need support services similar to hospice.

“…end of life care…really is providing a de-escalation of active treatment and an increase in supportive care whether its pain relieving measures…it could be any type of palliative chemotherapy and radiation. Pain control is a big issue [and a disease process] can have a fairly long trajectory.  I have clients that relapse and may continue to have fairly active lives for a year or two may be more.” - CA3

Burden of Chronic Diseases

In the United States, there are ten leading causes of death. Number one and number two are heart disease and cancer, respectively. It is projected that by the year 2030, cancer will overtake heart disease as the number one cause of death. Rounding out the top ten are chronic lower respiratory disease, stroke, unintentional injuries or trauma, Alzheimer’s disease, diabetes, kidney disease, pneumonia and intentional self-harm. These are populations who receive a large amount palliative care.

As of 2011 from the Center to Advance Palliative Care in the Payer-Provider Toolkit, the top 5% of health care spenders accounted for an estimated 60% of health care costs. This poses a huge problem for healthcare systems, hospitals, government agencies and reimbursers, because the costliest 5% of healthcare spenders consisted of three groups of patients:

1. Those who are in their last year of life (11 percent)
2. Those who have high acute care needs one year, but return to baseline in subsequent years (49 percent)
3. Those who will live for years with a serious illness and during that time have consistently high health care costs (40 percent)

Financial Implications

What are some of the financial implications of this? Ten percent of the sickest Medicare beneficiaries accounted for about 57% of the total program spending, which was more than $44,000 per capita per year. When palliative care services are involved, they noted a net per patient savings per episode of care of almost $2,700.

“There is a lot of good evidence now that if you get physio (PT) soon and for a long time, the outcome is better; once you can show that, it’s pretty difficult for any system to deny services. I would really say the second one is advocacy; if you’re living in an area where people who strongly advocate for good palliative and hospice care and advocate for physio being involved, it will generally happen.” -CA5

Palliative Care Team

Who is on the palliative care team? Often, physical therapists are more used to working with a patient individually and interacting on occasion with the care team, only when issues arise. In palliative care, the norm for these patients entails having issues arise; it's not the exception. It's extremely important for physical therapists and physical therapist assistants who are working on the palliative care team to work hard to integrate themselves into this team of physicians, case managers, social workers, occupational therapists, speech language pathology colleagues, clergy, and, of course, the caregivers, family members, and the patient. These are all integrated members of the care team. Quite a few palliative care organizations do have either telecommunication or face-to-face palliative care meetings.

I practice primarily in the hospital, but I also do some home care physical therapy. Our home care physical therapy leader will call in and conference in on the hospital-based palliative care team rounds. On occasion, she will also attend those rounds, but the idea is to smooth the transition from an acute hospitalization through the home care or post-acute care environment. Communication and collaboration are especially important in this environment.

Care & TLC Model

Many different organizations do not refer to themselves using the terms “palliative” or “hospice.” Not that they want to be misleading, but trying to explain those terms to a patient may shut down the conversation. Instead, they create an acronym or an alternate name; one that’s a little more patient-friendly. At Beaumont, we call it the Care and TLC model (care and treatment for lifelong conditions). In essence what they're doing is providing palliative care services with the eventual transition toward hospice services.

This is a specialty program within home care. There are specialized palliative care physical therapists, but they can also be covered by "non-palliative care" physical therapists who have a passion or specialization in this area. For example, we do have some lymphedema therapists who are not necessarily palliative care experts, but they might get consulted for palliative lymphedema management for a patient with a life-threatening illness. Certainly, they have to meet homebound status, but curative treatments can continue in this environment. For many patients who are adamantly opposed to hospice, they may choose palliative care and potentially stay on it lot longer than they're supposed to, because they don't want to give up on those curative care measures.

Homebound Criteria

The Medicare homebound criteria indicate that:

• The patient must be homebound
• Leaving the home requires a considerable and taxing effort
• Absences from home for medical reasons (including palliative care consultations) are allowed and non-medical reasons are allowed if infrequent for short periods of time
• There is a normal inability to leave home without assistance
• Patient does not need to be confined to bed