Holding On… and Letting Go When an SLP cared for her father at the end of his life, she came to see palliative rehabilitation as a paradox. The experience transformed her approach from treatment-oriented to well-being-oriented. Features
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Features  |   February 01, 2015
Holding On… and Letting Go
Author Notes
  • Maggie Vescovich, MS, CCC-SLP, is a speech-language pathologist at Holy Redeemer Home Care and Hospice in Philadelphia and section leader of the Allied Therapy Section for the National Hospice and Palliative Care Organization. She is an affiliate of ASHA Special Interest Group 15, Gerontology. mvescovich@holyredeemer.com
    Maggie Vescovich, MS, CCC-SLP, is a speech-language pathologist at Holy Redeemer Home Care and Hospice in Philadelphia and section leader of the Allied Therapy Section for the National Hospice and Palliative Care Organization. She is an affiliate of ASHA Special Interest Group 15, Gerontology. mvescovich@holyredeemer.com×
Article Information
Swallowing, Dysphagia & Feeding Disorders / Special Populations / Older Adults & Aging / Healthcare Settings / Professional Issues & Training / Features
Features   |   February 01, 2015
Holding On… and Letting Go
The ASHA Leader, February 2015, Vol. 20, 48-53. doi:10.1044/leader.FTR2.20022015.48
The ASHA Leader, February 2015, Vol. 20, 48-53. doi:10.1044/leader.FTR2.20022015.48
For 35 years, my father, Zeke, and his younger brother ran their own business in New York City. Fierce independence, like the city itself, ran in his blood. So, after my mother’s death, I know it was tough for him to leave the city and move close to me in Philadelphia.
But at age 75, he soon learned his way around his new city and was once again the way he liked to be: in charge of his own life. I was with him, but with miles between us.
Then, one day near his 82nd birthday, he got bad news. The severe pain that sent him to the emergency room in the middle of the night turned out to be advanced colon cancer. And so, this story is one daughter’s journey with him as his caregiver during a year of decline.
Going into it, I had assumed that my educational and clinical background in speech-language pathology had prepared me well. But my graduate education had not included any instruction on relating to people who are terminally ill. And my clinical experience had not provided opportunities to explore my own perceptions of end-of-life care.
Because we, as rehab professionals, do not always receive much formal training in treating patients with advanced illness, we may naturally assume that the traditional rehabilitation model, which emphasizes treatment for recovery and independent living, is the only one available. My experience with my father helped me recognize that rehabilitation in palliative care is a paradox.
I have reframed my practice with these patients in terms of the palliative care models described by physical therapist Richard Briggs that are often used in interprofessional practice by physical and occupational therapists: Depending on the patient’s needs, we choose to provide either traditional rehabilitation, a lighter version (“rehab light”) or rehabilitation in reverse—services tailored to promote adjustment to deteriorating functioning. This reconceptualization allowed my dad to remain where he wanted to be most of all—in his own home—and dramatically changed the way I view and help my own patients with advanced illness and the caregivers who love them. I will share what I’ve learned.

Going into it, I had assumed that my educational and clinical background in speech-language pathology had prepared me well.

Rehab light
After emergency life-saving surgery and a two-week hospital stay, Zeke reluctantly agreed and was admitted to rehabilitation at a skilled nursing facility. I visited at night and listened to him describe the exercises provided by his occupational and physical therapists—familiar descriptions of traditional rehab aimed at advancing the patient from illness to wellness.
Zeke worked hard to build his strength enough to return home—and did four weeks later, with a walker. Though his cancer was too advanced to be cured, Zeke underwent oral chemotherapy for a chance to prolong his life. I hired a part-time home health aide to help him daily, and he continued his rehabilitation with home-based physical and occupational therapy, though only once a week or every other week. This was the “rehab light” model of palliative care—a less intensive approach to treatment, with the emphasis on quality of life.
After a month, the chemo’s side effects were too much, and Zeke discontinued it. On the advice of his home care nurse, we opted for home-based hospice. As he signed the papers, he eyed me quizzically and asked, “Are you ready for this?” Zeke was extending me a rare invite into his world. I thought about my years of graduate education and clinical practice in home care and acute care, and I judged I was well-prepared for my new role as caregiver for my once-independent father, now a terminally ill patient. I was grateful for the invite, and readily agreed.
Zeke put the walker in the closet.

Zeke put the walker in the closet. Thus began the first of many paradoxes we encountered on this journey: We were facilitating Zeke’s comfort and quality of life, all the while supporting his approaching death. And he was thankful that he could continue being his own boss at home.

ACCEPTANCE
Thus began the first of many paradoxes we encountered on this journey: We were facilitating Zeke’s comfort and quality of life, all the while supporting his approaching death. And he was thankful that he could continue being his own boss at home.
Over a year, the disease slowly robbed him of flesh, strength and endurance, and we moved into the “rehabilitation in reverse” phase of his palliative care: Therapies were less frequent and focused on adaptations that would allow him maximum independence. Energy conservation strategies allowed him to make simple meals. The physical therapist pulled the dusty walker out of the closet. We removed doors and installed a lift chair.
I gained new appreciation for the demands of caregiving. As a wife and mother working full time, I was shopping for both households and constantly stopping at Zeke’s to check on him. I grew especially worried when he began to experience falls. Once, he even fell backward into his empty bathtub and lay there for six hours until discovered—cold and hungry. Zeke finally agreed to a medical alert system, and as I placed the emergency call button necklace around his shirt collar, I realized he had made this compromise for me.
I also realized that for patients with advanced illness, supporting their letting go of lifelong functions such as eating, talking and even life itself, is a part of our role as SLPs. The gift my father gave me was the opportunity to push and pull each other as we together addressed the paradox of a good life while dying. And to face the fears we all face when it comes to death, terminal illness and grief.
I asked his nurse if I should take family/medical leave to care for Zeke. She responded, “Not yet. You’ll know when it’s time.”

The gift my father gave me was the opportunity to push and pull each other as we together addressed the paradox of a good life while dying. And to face the fears we all face when it comes to death, terminal illness and grief.

Rehabilitation in reverse
One night is etched in my memory. As Zeke stood from his lift chair at bedtime, I saw swollen legs and feet attempting to feel the floor underneath. When he finally reached the bed 15 minutes later, he sat down with a groan, his face registering the struggle. I offered that everything could be done bedside from now on, and he seemed surprised. “Really?” he asked. As I assured him it could, a look of relief crossed his face.
His nurse was right. I knew now was the time to spend 24/7 with Zeke.
During the first week Zeke was bedbound, he allowed me and other family members to care for him. The complementary therapists provided comfort measures such as massage and lymphedema management. As his need for pain medication increased, he slept more. His appetite declined to pleasure feeds only, and he began to cough while drinking thin liquids. But when I mixed thickener into his juice, he screwed up his face and grimly asked, “What’s that?”
In another “rehabilitation in reverse” moment, I put away the thickener.
During his second week in bed, he slipped into a coma. Then several days later, on Feb. 12 at 6:10 p.m., I witnessed Zeke quietly take his final breath, as if satisfied with the good fight. It had been a little over a year since he first signed onto hospice care.
It’s now been seven years since my father passed away.
Another story
Even after reading this story about Zeke and me, you may be thinking, what do physical therapy models of palliative care have to do with me, as an SLP? My answer is: everything. Many of us do not recognize the value we bring to the interdisciplinary team treating patients who are at end-of-life—or even if we do, we may not market our services accordingly.
What would SLP intervention, using models of palliative care, look like with a patient with advanced illness?
Let me quickly tell you another story.
Recently I had a patient, “Rosemary,” with dementia. She returned home from being hospitalized for weight loss and dysphagia. During the hospitalization, her husband agreed to a percutaneous endoscopic gastrostomy tube placement. However, he told the home care nurse that he wanted to “see if we can get this feeding tube removed.” I was consulted to assess her swallowing and nutritional status.
Rosemary is nonambulatory, alert and conversational at times. She has the classic problems with oral-stage dysphagia, including prolonged chewing and pocketing and refusal of food. I determined that Rosemary, as well as her caregivers, would be good short-term candidates for “rehab light.” I counseled her husband and daughters on meal timing, size and textures that would best motivate Rosemary to take food by mouth. I partnered with them as they slowly understood how to balance tube and mouth feeds for optimal nutritional support. On my fourth and final visit, I scheduled a three-month re-evaluation to determine if there was any change of status that would warrant moving her into “rehabilitation in reverse.”
You might wonder: Why not just let the nurse or dietician handle all the instruction and teaching? Because we are the medical professionals who are the most knowledgeable and skilled to provide this training and instruction. Delivering holistic treatment is part of our responsibility on interdisciplinary, palliative care teams.
This brings me to what I call the “soft side” of caring for those with advanced illness. At the Level 1 trauma center where I worked for 20 years, it was typical for chaplains or social workers to address emotional or spiritual issues, giving me the impression that these aspects weren’t my responsibility. Yet the Joint Commission, in a 2003 article, maintains that “nurses, physicians, clinicians and other caregivers play equally important roles” when it comes to such matters.
And so it is that I’ve come to appreciate that addressing the psychological, social and spiritual needs of our patients and their caregivers is the responsibility of every single one of us.
Medicare Covers Skilled Rehab Services Regardless of Functional Improvement

Speech-language pathologists and other rehabilitation professionals may bill Medicare for services that help patients maintain or prevent decline of function. The 2014 federal Jimmo v Sebellius settlement required Medicare to revise its policy manuals to reflect that reimbursement for therapy services will not be denied merely because the patient’s function does not improve. Six manuals now state: “Coverage of skilled therapy does not turn on the presence or absence of a patient’s potential for improvement from the nursing care, but rather on the patient’s need for skilled care.” This and other statements in the manuals place the responsibility of clear documentation of skilled services on the SLP.

ASHA has developed documentation examples and guidance. Federal officials who oversee the contractors primarily responsible for auditing medical records reviewed and accepted that guidance and distributed copies to those contractors.

1 Comment
March 13, 2015
Ginger Anderson
need more of this
I don't think we talk enough about this as SLPs. Thanks for sharing your clinical and personal perspectives.
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February 2015
Volume 20, Issue 2