Occupational therapy practitioners are trained to evaluate and provide interventions to patients across their lifespan.
They practice in diverse settings with the goal of enhancing the quality of life via engagement in meaningful occupations. Across practice settings, occupational therapy practitioners play a distinct role in the interprofessional team due to their person-centered and holistic approaches to care. Occupational therapy practitioners can play an integral role during end-of-life care.
End-of-life stages, which could be due to a terminal illness or general aging, can include palliative, hospice, and bereavement care. Although these terms might be used interchangeably, they do represent different philosophies of care.
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The World Health Organization describes palliative care as a treatment approach that aims to “improve quality of life of individuals (and their families) by emphasizing prevention and alleviating discomfort through early recognition, assessment and intervention of pain and other problems whether physical, psychosocial or spiritual.”
Palliative care can involve a wide range of diseases for both children and adults. It can help children and adolescents living with many serious illnesses, including genetic disorders, cancer, neurologic disorders, heart and lung conditions, and others. Most adults who seek palliative care have chronic diseases including but limited to cardiovascular diseases, cancer, chronic respiratory diseases, AIDS, and diabetes.
Other conditions that may require palliative care include:
- Chronic kidney/liver disease
- Multiple sclerosis
- Parkinson’s disease
- Rheumatoid arthritis
- Degenerative neurological diseases such as dementia
Palliative care can also play a role in helping to connect a person/family with community resources. These resources range from support groups to respite care, and can be provided in hospitals, skilled nursing facilities, outpatient facilities, or within the home.
Palliative care differs from hospice care in that palliative care can begin at any point in the person’s illness, whereas hospice care is initiated and takes place within the terminal stage of the client’s condition.
The National Hospice and Palliative Care Organization describes hospice care as providing support and care for individuals in the final phases of a terminal disease in order to enhance the quality of remaining life. Hospice care is typically not initiated until one is expected to live six months or less and a cure for the illness is not possible. Cancers, cardiac and circulatory problems, severe stages of dementia, respiratory disease, stroke are the most prevalent conditions seen for hospice services.
Medicare and other insurance companies typically reimburse providers for hospice care if the patient meets the requirements, e.g., if a patient has a terminal disease with a life expectancy of less than six months and is entitled to Medicare part A Insurance.
An interprofessional care team
Both palliative and hospice care services bring together an interprofessional team of people with unique skills, including nurses, doctors, physician assistants, pharmacists, social workers, rehabilitation professionals (such as physical and occupational therapists), spiritual advisors and trained volunteers.
Hospice care can take place in the hospital, a free-standing hospice facility, or within the home.
The role of OTs in end-of-life care
Within both palliative and hospice care, occupational therapy practitioners collaborate with the person, family members and caregivers to enable engagement in occupations that provide meaning and enhance quality of life. This might include:
- Addressing environment accessibility (e.g., modifications for wheelchair access)
- Caregiver training (e.g., functional transfer training to safely use bedside commode or how to maintain safe body mechanics when performing bedside linen changes)
- Training on how to use durable medical equipment, adaptive equipment or assistive devices to promote safe independence levels
- Fabrication of an orthosis to prevent deformity or reduce pain
- Patient education to conserve energy and protect joints when performing desired daily activities
- Providing opportunities for social participation (e.g., being able to see, talk, spend time with friends and family etc.)
- Promoting autonomy and dignity during end stages of life (e.g., facilitating life reflection, spirituality and strategies for death planning)
Legacy occupations are an often-overlooked occupational performance area during end-of-life care. Legacy occupations are actions or things that allow a person to share (or pass on) a part of themselves with others. The unique and holistic training and expertise of an occupational therapist provides person-and family centered care to positively influence the life of individuals receiving hospice care.
End-of-life care evaluation
As with any new encounter in practice, the occupational therapy process begins with an evaluation. This includes obtaining an occupational profile followed by an analysis of occupational performance. OTs can obtain an occupational profile via client, family or caregiver interview. This will help the therapist understand the individual as an occupational being, and gain an understanding of the occupations, roles, habits, routines and more specifically their view of life and expectations of dying.
The American Occupational Therapy Association provides an Occupational Profile Template on their website, which can be a useful tool to use during end-of-life care. It can help the person and family members define their own legacy occupations and identify occupational roles that provide them meaning.
Legacies are usually closely connected to the meaningful occupations and occupational identities that people develop throughout their life. They can include personal belongings (such as photographs, autobiographies, etc.) and actions such as spiritual and religious practices, medical decision making and health behaviors, career and volunteer roles.
The analysis of occupational performance assesses the individual’s body systems and bodily functions, as well as any impacted performance skills. Aligned with a person (family-centered) approach, an occupational therapy practitioner might also analyze the skills and performance levels of caregivers to determine and help prioritize interventions for specific skill training.
Creating an intervention plan
Based upon the evaluation, the occupational therapy practitioner would then create an intervention plan in direct collaboration with the individual, family and caregivers. Interventions for the individual might emphasize strategies to reduce symptoms that impact occupational performance levels, such as positioning recommendations to relieve pain to increase sleep, or training on how to voice-activated speech to text features on technology to increase/maintain communication with loved ones.
Interventions can also target training of the family or caregivers to address environmental barriers (e.g., education on fall prevention strategies or support in building a daily routine to aligns with the person’s strength and capacity levels) and how to develop healthy copying strategies.
Research supporting the role of occupational therapy during end-of-life care emphasizes shows positive outcomes in quality of life for patients receiving end of life care that utilize both palliative care and physical medicine and rehabilitation services such as physical and occupational therapies.
Grief after a loved one’s death is only natural. Bereavement care encompasses emotional and physical reactions of grief and mourning after death. The National Hospice and Palliative Care Organization describes bereavement care as an integral component of end-of-life care.
Occupational therapy practitioners can inspire hope and provide care for both the patients and their caregivers throughout the end of life. Encouraging ongoing legacy projects and the completion of valued shared occupations among the family can contribute to healthy grieving.
Occupational therapy practitioners bring valued perspectives and training to the palliative and hospice care team to help individuals live their final days of life to the fullest.
This article was written by Elizabeth D. DeIuliis, OTD, OTR/L.