Walking in to a restaurant and sitting down to dinner with five children is always a bit of a scene.
Strategy is required for who sits where, who is kept separated, and what everyone can and can’t order.
“I don’t want to hear any of you sneaking and asking the waiter for Dr. Pepper, and I mean it!”
So, when the waiter kindly introduces himself and then asks everyone what their names are, you as a parent have somewhat of a sense of relief … “OK, this is a family friendly place. We can definitely get through this meal.”
Then comes 4-year-old Emmy’s response on behalf of the family to the waiter.
“We are the Kinder family and we don’t die.”
“Excuse me, little one, what did you say?”
A little louder, Emmy stands in her chair and responds, “We are the KINDERS and we DON’T DIE.”
Then my husband, under his breath, “No, we don’t die. We just multiply.”
The kids chuckle, the waiter is still confused, and I proceed to order drinks for the group.
“Give them all water.”
Emmy, it seems, has been fixated lately on where her great-grandfather is. Every holiday, birthday and event where family is present she is certain we have a member missing. Great-grandmother is here so where is great-grandfather?
My efforts to explain life and death, it seems, have failed and as a result she wants to make sure all current members continue living. If I remain positive and continue to say our family doesn’t die, then they will not. Or such is the logic for a 4-year-old.
Therapists, in a similar grain, often spend their days in the world of rehab or maintenance with an outlook toward the positive, increasing or maintaining function, and goals aimed at returning home or to a lesser level of care.
Death and the dying process, however, are times when occupational and physical therapists and speech language pathologists can have a significant impact, such as when they’re engaged in hospice and palliative care.
Death and the dying process, however, are times during the life span during which occupational and physical therapists and speech language pathologists can have a significant impact when engaged in the hospice and palliative care process.
The national associations AOTA, APTA, and ASHA provide tools and guidance for therapy professionals with considerations listed below:
Activities of Daily Living (ADLs)
- Dressing: Use adaptive equipment, modified techniques, energy conservation principles, and proper body mechanics to minimize fatigue, overexertion, and pain (e.g., getting dressed in bed to maximize independence and safety).
- Bathing and showering: Use specialized or adaptive equipment to maximize safety (e.g., grab bars, shower bench) and incorporate energy conservation principles.
- Functional mobility: Incorporate falls prevention strategies (e.g., remove hazards like scatter rugs, improve lighting) and foster awareness of safety issues and limitations within the environment, while reinforcing confidence and capabilities. Provide optimal positioning and mobility devices to increase comfort and safety, while decreasing risk for pressure sores.
Instrumental Activities of Daily Living (IADLs)
- Meal preparation: Incorporate energy conservation principles and activity modifications such as using wheeled carts and reorganizing kitchen storage for easier access. Encourage a healthy diet and provide resources for nutrition management.
- Home management: Assess activity tolerance and body mechanics with tasks such as house cleaning or doing laundry, if appropriate. Suggest activity modifications, support systems, adaptive equipment, pacing, and energy conservation techniques.
- Health management: Provide strategies on how to manage symptoms associated with fatigue, pain, anxiety, or shortness of breath during daily activities.
- Religious or spiritual activities: Modify activities or resources to help develop or maintain spiritual involvement, if desired (Pizzi, 2010).
Rest and Sleep
- Assess sleeping habits and the person’s sleep/wake cycle, and develop pre-sleep routines to facilitate longer restorative sleep periods.
- Provide relaxation techniques and positioning to increase comfort, improve ability to rest, and reduce skin breakdown from pressure.
- Identify and facilitate ways to participate in enjoyable leisure and community activities despite altered capabilities ties and roles through modifications and/or by exploring alternatives.
- Use relaxation techniques, coping strategies, anxiety management, time management, and activity pacing to facilitate participation in desired activities.
- Identify and facilitate ways to maintain cognitive function (e.g., memory and concentration) to participate in meaningful activities.
- Engage clients and their family in discussions about their feelings, fears, and anxieties. If appropriate, provide support and resources to assist in creating a client-centered, end-of-life plan, and staying organized during the process (Pizzi, 2010).
- Encourage communication and family involvement to support the client’s wishes, and promote continued social connections (Park Lala & Kinsella, 2011).
- Support the role of the caregiver, including communication about realistic expectations, and education on safe body mechanics and techniques during daily activities and transfers, management, and resources to decrease burnout (e.g., caregiver support group, or adult hospice day care).
The American Physical Therapy Association endorses the inclusion of the following concepts in hospice and palliative care:
- Continuity of care and the active, compassionate role of physical therapists and physical therapist assistants in hospice and palliative care
- Respect for the rights of all individuals to have appropriate and adequate access to physical therapy services, regardless of medical prognosis or setting
- An interdisciplinary approach, including timely and appropriate physical therapist and physical therapist assistant involvement, especially during transitions of care or during a physical or medical change in status
- Education of physical therapists, physical therapist assistants, and respective students in the concepts related to treating an individual while in hospice and palliative care
- Appropriate and comparable coverage and payment for physical therapy services for individuals who have transitioned to hospice or palliative care in all clinical settings
Finally, speech-language pathologist also play a role in providing care for patients nearing end of life.
“SLPs contribute to the overall quality of life of patients nearing end of life. The goal of intervention at this point is not rehabilitative, but facilitative. If a patient has swallowing difficulty, for example, the SLP works with the patient and caregivers to develop compensatory strategies that will allow the patient to eat orally for as long as possible. The SLP may also be asked to participate in team decision-making regarding the use of alternative nutrition (e.g., tube feeding) (Landes, 1999). If the patient has difficulty speaking due to impaired breath support or deconditioning, the SLP helps develop an alternative communication strategy that will allow the patient to express his wants and needs effectively. Again, the expected outcome of intervention at this point is not necessarily that the patient’s abilities will improve, but that they will be able to use the abilities they still possess to interact with family and friends and/or enjoy favorite foods, if that is their wish.”
So, yes, my sweet Emmy, everyone dies. However, with the help of loving and experienced caregivers the process can be eased for the individual and their families.
Your great-grandfather, for example, spent his last day being declared deceased after a cardiac event, sending your mother four hours away into complex turmoil …
… only for him to “come back to life” while your aunt, mourning and holding his hand, felt a pulse.
He then resolved to spend the evening with palliative services, surrounded by family, with you in Mom’s belly, with laughter, stories and extra servings of vanilla ice cream.
And he still comes back to us, in the cleverest ways … This week, in the form of a shiny new car.
But you will all have to stay tuned for the next Rehab Realities to hear the goodness of that “Buster Brown” tale.
Renee Kinder, MS, CCC-SLP, RAC-CT, is Vice President of Clinical Services for Encore Rehabilitation and is the Silver Award winner in the 2018 American Society of Business Publishing Editors competition for the Upper Midwest Region in the Service/How To Blogs category. Additionally, she serves as Gerontology Professional Development Manager for the American Speech Language Hearing Association’s (ASHA) gerontology special interest group, is a member of the University of Kentucky College of Medicine community faculty, and is an advisor to the American Medical Association’s Relative Value Update Committee (RUC) Health Care Professionals Advisory Committee (HCPAC).