Caring Greatly


Innovating physical therapist practice in end of life care.

By Karen Mueller, PT, PhD, DPT; Richard Briggs, PT, MA; Valerie Carter, PT, DPT NCS; and Christopher Wilson, PT, DScPT, DPT, GCS

In the recent past, healthcare initiatives such as the Institute for Healthcare Improvement’s (IHI) Triple Aim and the American Physical Therapy Association’s Vision Statement have identified “improvement of the healthcare experience” as a benchmark of patient centered care. These initiatives invite every stakeholder in the healthcare system to improve the needs of all populations through value driven outcomes.

Now, as the cohort of 70 million baby boomers moves towards end of life, we can no longer afford to ignore the increasing needs of those with severe, life threatening conditions. Many such persons undergo costly and futile interventions to the point where 25 percent of Medicare expenditures occur in the last year of life 1 Consider this scenario from one of our patients.

Jake, 65, had recently retired from his position as the manager of a large restaurant supply company, and his wife Sharon was enjoying her role as grandmother of five. The couple had just sold their home were planning to travel across the country in their mobile RV. One week before their departure, they were dining with friends, and Jake noted that he seemed to be slurring his words. A few days later, his adult son jokingly asked if Jake was intoxicated. Within the next two weeks, Jake’s slurring became more pronounced, and he also began to have difficulty with right hand dexterity. Jake visited his primary care physician who then sent him to a neurologist. An EMG confirmed Bulbar onset ALS. Now with his life upended, Jake found himself blindly navigating the bewildering miasma of our health care system. He and Sharon were exasperated by the endless repetition of his history to every provider, none of whom communicated with the other. His bi-pap delivery was delayed for three months by the inexplicable “loss” of the required paperwork. When the device finally arrived, improper settings led to respiratory complications and a costly hospitalization. No longer able to swallow without the risk of aspiration, Jake underwent placement of a feeding tube. By the time he was admitted to hospice, his finger flexors were severely contracted and he was in constant pain from muscle spasms. Throughout the six months of his disease course, not one of his providers mentioned the need for physical therapy intervention.

Jake’s case describes a common scenario in our fragmented health care system, illustrating the need for coordinated end of life care. Such intervention should ideally begin at the point of diagnosis with timely referral to a palliative care program. According to the National Consensus Project for Quality Palliative Care palliative care is defined as “patient and family centered care that optimizes quality of life by anticipating, preventing, and treating suffering…in conditions where cure or reversibility is a realistic goal, but the conditions themselves and their treatments pose significant burdens and result in poor quality of life,”2

Palliative care is ideally provided throughout the continuum of illness in order to facilitate patient/family autonomy, quality of life, access to information, and choice of care. Palliative care programs also help patients to coordinate their care, to understand their condition, and to cope with related physical, emotional, and psychological distress. Payment for services rendered is the same as that for any other health related treatment.

Had Jake been involved in a palliative care program, he would have received timely and participation enhancing interventions, including those from a physical therapist. Most importantly, referral to a palliative care program would have prevented his costly and disabling complications.

The following paragraphs will describe current innovations in physical therapist practice in the population of those with life threatening disease as well as those at end of life.

Hospital Based Palliative Care

Hospitals and integrated health care systems are rapidly developing and solidifying comprehensive palliative care programs which are generally interdisciplinary in nature. The goals of these palliative care programs are to decrease readmissions and provide proactive, holistic care to avoid undue overutilization of acute care services and concurrently optimizing a patient’s remaining quality of life and safety.

Palliative care consultations have documented marked savings during hospital admissions. Due to various Affordable Care Act provisions including Patient Centered Medical Homes (PCMH) and Accountable Care Organizations (ACO)s, hospitals are incentivized to provide integrated services for chronically ill individuals.

Especially in rural or underserved areas, hospitals may be looking to partner with private clinics to help provide programs and services, especially as they relate to keeping an individual with a chronic illness from having an unwarranted readmission. In addition to traditional intervention-based physical therapy care, programs such as exercise and wellness sessions, family ergonomic training sessions, and fall and balance clinics are a few examples of possible collaborative offerings for palliative care patients within the private practice setting. As these services are generally found to be a valued service to patients and families, there may be opportunity for out-of-pocket payment in the circumstances that insurance coverage is not feasible.

In providing care for patients who have chronic illness or in palliative care, it is important to monitor the patient for early signs of medical re-exacerbation. Assessment of vital signs, gait speed, and other functional measures should be taken at baseline and at frequent, regular intervals with proactive communication to care providers. Often a hospital system providing condition-specific chronic disease management has a nurse navigator or other primary provider who supports these individuals across the continuum of care. This person may be an appropriate first contact if a medical exacerbation is suspected and intervention warranted.

Hospice Care

Hospice provides palliative care for persons who have been certified by a physician to have a probable life expectancy of six months or less. People who receive hospice elect to no longer receive curative treatment for their underlying disease. The Medicare hospice benefit provides coverage for the comprehensive management of the hospice diagnosis and symptoms through medications, in-home nursing care, other disciplines and equipment.

Hospice care is provided in the homes of nearly 70 percent of the 1.6 million people receiving services annually 3. Medicare’s Conditions of Participation mandate that physical therapy services must be made available and provided according to accepted standards of practice 4 Nationally, agencies demonstrate wide variances in actual utilization, although physical therapy can be a strong organizational asset that enhances quality of life, patient satisfaction, caregiver safety, and market positioning for this underserved niche.

While some hospices hire physical therapy staff, many contract this service with private practice providers. Physical therapists who practice in hospice must be prepared to meet the needs of the patient and family with a realistic palliative approach, while recognizing the organization’s fiscal concerns in managing a per diem reimbursement rate of $160 daily for staff, medications, and equipment.

Five palliative models of care have been developed for this practice niche 5.

Rehab Light can be applied to reach goals of improved strength and function with graduated intensity and decreased frequency (weekly to biweekly), and is appropriate for new patients who are debilitated from treatment and disease effects, yet hopeful of gradual short-term improvement despite their prognosis of less than six months.

Case Management and Skilled Maintenance are models that provide oversight of physical status and functional mobility with intermittent reassessment, patient intervention, and family training to assure safety and independence, again with a variable and lower frequency than traditional rehabilitation. Their basis is from Medicare Home Health Guidelines and has been affirmed by the recent Jimmo vs. Sibelius Federal court findings. Rehabilitation in Reverse is the predominant model with patients declining in function over time, where physical therapy intervention provides skilled training to patient and caregivers as performance status decreases to maximize safety, independence, and family autonomy at each new level through the natural end of life process. Supportive Care includes comfort measures for pain management and massage to control edema, as well as the psycho-social-spiritual support that underlies all hospice and palliative care.

A responsive physical therapist will optimize communication with the interdisciplinary team. Providing feedback to referring staff is a basis for collaborative practice in meeting end of life goals, as well as identifying both ongoing care needs and future referral indications. The challenges of visit timing and variable frequencies must be met for patients with fragile and changing health and mobility issues in order to develop a successful hospice practice.

Considerations for Practice

Physical therapy intervention is an important aspect of the comprehensive management of a person with a life threatening serious disease, whether in palliative care or hospice settings. The physical therapist must be cognizant of patient disease process and severity as these will guide intervention. For example, the application of active or passive upper and lower trunk rotation is critical for persons in end stage Parkinson disease (PD) in order to reduce the severe rigidity and/or dystonia that occur in the later stages of this disease. As a result of optimal range of motion, movement quality, circulation and respiration quality can be enhanced.

There are few studies exploring the incidence and intensity of pain in persons with late stage neurodegenerative disease such as Multiple Sclerosis, PD, or ALS, however, reports from patients with these diseases suggest that it is a disabling symptom, similar to end stage cancer. For example, patients with PD often experience severe pain from dystonia in their feet and toes which limit balance and gait. Interventions such as interlacing fingers between the patient’s toes, massage, toe stretches with overpressure and/or weight bearing pressure and application of toe spreading socks can impact sleep and movement quality in the end stages of life.

Cognitive issues are also of concern in persons with severe disease. Persons with Multiple Sclerosis (MS), may demonstrate euphoria, leading them to misjudge the level of actual functional ability and pain, and contributing to lack of safety.

As physical therapists, we must advocate improved quality and quantity of functional mobility along with reduced levels of pain in the late stages of a disease. Thus, physical therapists must be be mindful of the specific complications and needs that arise along the disease continuum. Physical therapists must advocate a movement based approach to the improvement of symptoms from diagnosis until death, using outcome measures to demonstrate outcomes. Finally, patient and family education about the disease process and targeted strategies to manage symptoms add to the value to our interventions while improving patient quality of life.

The opportunity has never been greater to affect innovative practice approaches in end of life care. In order to prepare, we offer the following recommendations.

  1. Regardless of practice setting or location, physical therapists should be aware of palliative care programs in their area as well as associations which provide support to seriously ill patients. Physical therapists should take a prominent role in collaborating care and demonstrating value in healthcare systems.
  2. Physical therapists who treat patients with severe, life threatening disease, should inquire whether an advance directive is in place. There is evidence that the presence of an advanced directive saves healthcare costs by making patient desires explicit. Physical therapists can provide interventions around advanced directives which improve quality of life.
  3. Physical therapists must be prepared to demonstrate the value of their interventions in reducing 30 day readmission rates in hospitals, in reducing the need for pain medications and improving function, even at end of life. The selection of appropriate outcome measures will be imperative for the success of this initiative.


1. Riley GF, Lubitz JD. Long-term trends in Medicare payments in the last year of life. Health Serv Res. 2010 Apr;45(2):565-76 Accessed July 2016

2. The National Consensus Project for Quality Palliative Care Clinical Practice Guidelines for Quality Palliative Care 3rd edition 2013. Accessed July 2016

3. National Hospice and Palliative Care Organization Facts and Figures: Hospice Care in America 2014 Edition.

4. Federal Register, June 5, 2008. Department of Health and Human Services, Centers for Medicare and Medicaid Services. 42 CFR Part 418. Medicare and Medicaid Programs: Hospice Conditions of Participation; Final Rule.

5. Briggs R. Clinical Decision Making for Physical Therapists in Patient-Centered End-of-Life Care. Topics in Geriatric Rehabilitation. 2011; 27(1): 10-17).

Karen Mueller, PT, PhD, DPT, is a professor in the program in physical therapy at Northern Arizona University in Flagstaff, Arizona. She is the current chair of the APTA Oncology Section Hospice and Palliative Care Special Interest Group and a member of Rehabilitation Therapy Steering Committee of the National Hospice and Palliative Care Organzation. She can be reached at

Richard Briggs, PT, MA, has had a clinical practice in hospice and palliative care for 30 years. He is Adjunct Faculty at California State University Sacramento and is a clinical faculty for MedBridge Education. Rich is past Chair of the NHPCO Allied Therapy section and founding chair of the APTA Hospice and Palliative Care Special Interest Group.

Valerie Carter, PT, DPT, NCS, is an associate clinical professor in the program in physical therapy at Northern Arizona University where she teaches content related to neurologic rehabilitation, geriatrics, and therapeutic intervention. Dr. Carter has presented and published extensively in the area of life long management of chronic neurodegenerative disease.

Christopher Wilson, PT, DScPT, DPT, GCS, is an assistant professor in the program in physical therapy at Oakland University in Rochester, Michigan. He is also coordinator of clinical education at Beaumont Hospital in Troy, Michigan. Dr. Wilson is currently serving as the vice chair of the APTA Oncology Section Hospice and Palliative Care Special Interest Group and Hospice/Palliative Coordinator for the World Confederation for Physical Therapy Oncology, HIV/AIDS, and Palliative Care Network.

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