3 Questions That Could Change How You Provide End-of-Life Care How can we best support those with advanced illness? Ask yourself these questions to grow your treatment skills. On the Pulse
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On the Pulse  |   July 01, 2015
3 Questions That Could Change How You Provide End-of-Life Care
Author Notes
  • Maggie Vescovich, MS, CCC-SLP, is a clinician with Holy Redeemer Home Care and Hospice in Philadelphia and leader of the NCHPP/NHPCO Allied Therapy Section. She is an affiliate of ASHA Special Interest Group 15, Gerontology. mvescovich@holyredeemer.com
    Maggie Vescovich, MS, CCC-SLP, is a clinician with Holy Redeemer Home Care and Hospice in Philadelphia and leader of the NCHPP/NHPCO Allied Therapy Section. She is an affiliate of ASHA Special Interest Group 15, Gerontology. mvescovich@holyredeemer.com×
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Speech, Voice & Prosodic Disorders / Hearing Disorders / Cultural & Linguistic Diversity / Healthcare Settings / Normal Language Processing / Attention, Memory & Executive Functions / On the Pulse
On the Pulse   |   July 01, 2015
3 Questions That Could Change How You Provide End-of-Life Care
The ASHA Leader, July 2015, Vol. 20, 38-39. doi:10.1044/leader.OTP.20072015.38
The ASHA Leader, July 2015, Vol. 20, 38-39. doi:10.1044/leader.OTP.20072015.38
“I thought I was the only one doing this work!”
That’s usually the first thing rehabilitation professionals say when they contact me at the National Council of Hospice and Palliative Professionals (NCHPP/NHPCO). They are searching for resources to help those with advanced illness. Many are relieved to know that I and other rehab professionals are just as passionate as they are about seeing that these patients thrive despite their disease progression.
Naturally, they want step-by-step guidance. But wise counsel on the “how” questions first calls for several orienting conversations on the “what” questions.
Some of them may surprise you.
Should you even call it ‘rehab’?
Think about the words you use to describe what you do. Rehab is a perfectly good word. It is a way of caring for another person. It describes honest, well-intentioned and helpful interventions.
But the word “rehab” also carries unhelpful connotations. In the traditional model of rehab, one tends to think that the patient has an identifiable problem that, after aggressive treatment, will be significantly reduced or eliminated. But with advanced illness, the patient will not follow the upward trajectory of improvement, but instead, will show a decline in function over time.
Other models of palliative care from related disciplines can help define interventions for those with advanced illness. Physical therapist Richard Briggs, founding chair of the Hospice and Palliative Care Group of the American Physical Therapy Association, describes “rehab light” and “rehab in reverse” models in palliative care, which can also be applied to occupational therapy, speech-language treatment and audiology services. These models can provide the framework to help identify specific, measurable goals, focused on quality of life for patients and caregivers.
What can you do better or differently to help patients with advanced illness experience healing?
Chances are, you have treated, or will be asked to treat, children and/or adults with advanced illness, no matter what your work setting.
  • What kinds of personal conversations are taking place between you and your patients right now?

  • What types of questions are you already asking, or do you need to ask, to become more aware of the patient/caregiver’s understanding of the disease process?

  • What are their goals, and what is truly important to them? Every visit involves addressing both the physical problem and the suffering person, who may be fearful, angry or discouraged. Consider how this significant life transition can be a time for thoughtful reflection, for setting significant goals and for healing. But this isn’t healing in the sense of fixing people and making them well. It’s healing in the sense of filling the short time left with meaningful moments—and facilitating communication and oral intake can be a part of that.

This isn’t healing in the sense of fixing people and making them well. It’s healing in the sense of filling the short time left with meaningful moments—and facilitating communication and oral intake can be a part of that.

How can you grow personally and professionally in this area?
Working in end-of-life care is not just a matter of problem-solving for those with advanced illness. Every one of us faces the common struggles of life, including how we view illness and mortality. We would all do well to explore our own attitudes concerning end-of-life and acknowledge the fears we all face.
  • What ways do we look at our patients and, therefore, ourselves? Do we treat the whole person, as a unity of mind, body, spirit and subsystems in which they live, rather than looking at them as individual parts or individual problems to be solved?

Working in end-of-life care is not just a matter of problem-solving for those with advanced illness. Every one of us faces the common struggles of life, including how we view illness and mortality.

As professionals, we can start to provide true comfort and care when we recognize our own struggles and address them.
Self-reflection makes us wonder about:
  • Cultural similarities and differences regarding death and dying. Recognize the common human experience, while striving to always recognize, appreciate and work with the differences each person brings to the end-of-life conversation, differences influenced by the patient and caregiver’s ethnicity, race, culture, socioeconomic status, gender, language/communication ability, religion, sexual orientation, education, housing, family structure, disability and other factors.

  • How we are more like that person than different. The realization that we are not much different allows us to embrace death as a part of life for ourselves, as well as for others.

As you consider these matters openly, honestly and collaboratively, the path of your interventions for those with advanced illness will emerge, and will fit organically with who you are as an individual or as an organization.
2 Comments
July 7, 2015
Linda Carr
A view from the family side
This article hit home; my father's funeral was yesterday. He was diagnosed with a brain tumor April 6 and died July 2. One point I'd like to add is that our profession can be a comfort to the family as well. I was searching for an aug com app to help with communication and even wrote a communication story to help with his confusion, but the truth is, we didn't need either. As a profession, we can reassure families that they will be able to read and anticipate their loved one's changing needs. We can help by communicating to family members that they can still read their loved ones feelings, fears and pain better than any communication device. When we support each other, we can do more.
July 8, 2015
Margaret Vescovich
Caregivers are part of the team
Linda, my deep condolences on the loss of your Dad. Your point is well taken, our work is often with caregivers, who may initially feel insecure in being able to communicate with loved ones. Our intervention, as SLP's, can help to build their confidence in being able to provide for their loved ones. Nothing warms my heart more, than hearing a caregiver say, "oh, I know exactly what he is trying to tell me", when I ask if they are able to understand their loved one, who is non-verbal. Facial expressions, body language, gestures say so much, often more, than words can convey. My best regards to you, and your family during this time.
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July 2015
Volume 20, Issue 7