Palliative care is a model of care that aims to improve quality of life (QOL) for patients and their families/carers, who are facing the problems associated with a life-limiting illness (WHO, 2012). “A terminal illness can last for months, if not years, during which fluctuations in health can occur” (Schleinich et al., Reference Schleinich and Warren2008, p. 822). Until recently, palliative care has largely focused on the medical management of the specific symptoms of a terminal illness (e.g., pain, nausea and vomiting), with little or no consideration given to the patient's occupational identity and goals.
THE ACUTE MODEL OF PALLIATIVE CARE
The acute Palliative Care Unit (PCU) aims to integrate the philosophies of both hospice care and acute medical care (Jones et al., Reference Jones, Cohen and Zimmerman2010), resulting in a unit where the primary focuses are symptom management, supportive care, and discharge planning. A major metropolitan hospital in Melbourne is in the process of transforming their PCU model of care to adopt an “acute” model of palliative care practice. In the acute PCU, patients are regularly admitted for specific palliative care symptom management and discharge planning, in addition to admissions to the unit for end-of-life care. In this contemporary model of palliative care practice, when patients are admitted to the acute PCU for symptom management and discharge planning, they receive full medical management of their symptoms and full multidisciplinary team assessment (to address physical, psychosocial, and spiritual issues). Following this full team assessment and subsequent interventions, the patient is then discharged back to the community or to an appropriate long-term care facility.
WHAT IS MEANINGFUL OCCUPATION?
Occupational therapy is a profession whose core philosophy is grounded in occupational participation (Keesing & Rosenwax, Reference Keesing and Rosenwax2011). Occupational therapists consider meaningful occupation to be those activities that are of value/special interest to the individual. Occupational participation occurs when an individual engages in a personally meaningful occupation to some level (vanderPloeg, Reference vanderPloeg2001). Occupational therapists have the skills and expertise to incorporate an individual's functional goals into their treatment plan, thereby assisting people to participate in personally meaningful occupations, despite their physical/psychological limitations.
Quality of life is strongly linked to maintaining a sense of normality (Kaasa & Loge, Reference Kaasa and Loge2003). Keesing and Rosenwax (Reference Keesing and Rosenwax2011) argue that engagement in personally meaningful activities, relationships, and life roles is viewed as extremely important to the individual, helping them to maintain a sense of normality and achieve a sense of occupational identity. In addition, relinquishing their participation in these activities/roles frequently results in feelings of inadequacy and dependence (Keesing & Rosenwax, Reference Keesing and Rosenwax2011). For people receiving palliative care, their ability to engage in previously satisfying occupations is often compromised by their physical health. However, despite their physical limitations, the need to feel satisfied and productive through occupational engagement is not any less significant (vanderPloeg, Reference vanderPloeg2001). In fact, it may be possible that engagement in meaningful occupations of a patient's choosing contributes to achievement of a good death (Keesing & Rosenwax, Reference Keesing and Rosenwax2011). Increased dependency on others and the inability to participate in chosen activities and roles is regularly cited as one of the most distressing concerns for palliative care patients (Keesing & Rosenwax, Reference Keesing and Rosenwax2011; Schleinich et al., Reference Schleinich and Warren2008). It is therefore imperative that people receiving palliative care be afforded the same rights for occupational participation in personally meaningful occupations as those in the “healthy” population.
In this writer's experience, in the modern health setting there is a narrow view that an occupational therapist's singular role is to provide aid and equipment to the dying person to afford them better access to their home. This narrow view of occupational therapy as a profession results in limited outcomes for our patients and their families, because opportunities for optimal occupational participation are not routinely explored or addressed. This can also contribute to professional frustration, as occupational therapists are acutely aware of how expanding their role and interventions could improve an individual's QOL, but are often not provided with the resources to allow them to accomplish this.
HOW HAS PARTICIPATION IN MEANINGFUL OCCUPATIONS BEEN IMPLEMENTED IN A CONTEMPORARY PALLIATIVE CARE UNIT?
The following case studies provide individual examples of where occupational therapy has assisted inpatients on an acute PCU to identify and achieve their goals to participate in personally meaningful occupations. Each patient was admitted to the ward with differing ultimate goals of care: symptom management, discharge planning, and end-of-life care.
Case Study 1
Jane was referred to the occupational therapist for upper limb (UL) therapy following admission to the acute PCU for symptom management and management of functional decline. On initial contact with the occupational therapist, Jane identified her goal as returning to participating in her community African drumming group. Following establishment of this goal, occupational therapy interventions included: UL assessment and provision of UL therapy (shoulder protection education, active and passive range of movement exercises); encouragement for Jane to increase the functional use of her affected UL in daily tasks on ward (e.g., feeding self, brushing teeth); activity analysis of the activity of African drumming; facilitated participation in modified African drumming on ward; discharge planning; equipment provision; and carer training.
As a result of the acute PCU admission and occupational therapy interventions, Jane's symptoms were well managed, and she was discharged home to the care of her family. In addition, Jane's goal was achieved and she returned to active participation in her community African drumming group. Two weeks following discharge from the PCU, Jane's medical status deteriorated and she was readmitted to the acute PCU for end-of-life care. Both Jane and her family expressed gratitude at having had the opportunity to spend the previous two weeks at home and to achieve her goal of returning to African drumming.
Case Study 2
George was admitted to the acute PCU for symptom management and end-of-life care. George was referred to occupational therapy to explore the potential for day leave. Following initial occupational therapy contact, George identified that his goal was to return home to use his new train (which had just arrived from England) on his home model train set. To facilitate achievement of George's goal, occupational therapy interventions included: initial occupational therapy assessment, functional assessment of transfers/mobility, activity analysis for the activity of operating an electric model train set, and occupational therapy liaison with members of George's model train club to determine alternate options for operating his model train set.
One week following the initial goal-setting session with the occupational therapist, George participated in day leave from the acute PCU, facilitated by the occupational therapist. George returned to his own home; although he could not access the inside of his home (due to decreased mobility and home-access issues), and he achieved his goal and accessed the garage where his model train set was located. George spent three hours at home with his friends and family and acted as the train supervisor, instructing friends and family on how to operate the model train set. After his day leave, both George and his family expressed gratitude for the opportunity to achieve his goal. George's medical condition steadily deteriorated following his day leave, and he remained an inpatient on the acute PCU for end-of-life care.
Case Study 3
Karen was admitted to the acute PCU for symptom management and end-of-life care. On admission, Karen was requiring full nursing care and was unable to tolerate sitting out of bed due to uncontrolled pain and fatigue. Karen's fatigue was so extreme, she was unable to stay awake for periods longer than five minutes. As her medical symptoms were better managed, her level of alertness increased. A referral to occupational therapy was made to explore the possibility of allowing her to attend her daughter's wedding. Following initial occupational therapy assessment, Karen's goal was identified: she wished to regain her occupational identity and attend her daughter's wedding as a mother, not a cancer patient. Occupational therapy interventions to facilitate this goal achievement included: seating assessments and trials, pressure area risk assessment, graded return to sitting out of bed with the aim of gradually increasing sitting tolerance, carer training (e.g., safe manual handling, hoist transfers, pressure care, seating, positioning), occupational therapy home assessment and community access assessment (to determine accessibility of wedding ceremony venue and reception venue), complex equipment provision, and supportive counseling.
The outcome of extensive input from occupational therapy and the wider multidisciplinary team was that Karen's goal was achieved. She attended her daughter's wedding in the role of mother of the bride. Karen reported that she “danced all night” in her wheelchair, and her family members were relieved that they had successfully managed caring for Karen during her overnight leave. Karen then returned to the acute PCU and continued making small functional gains through ongoing physiotherapy interventions. The option of discharge home was then explored with Karen and her family. Following this discussion and further discharge planning, Karen was discharged home to the care of her family and community support services. Karen lived at home with her family for three weeks before returning to the acute PCU for end-of-life care. Karen was extremely grateful to the entire acute PCU team for not only facilitating her initial goal achievement, but for also enabling her to spend further quality time at home with her family.
RECOMMENDATIONS
A number of steps are required to further develop and incorporate meaningful occupational participation into everyday practice on the acute PCU, and into the broader health community. These include:
1. More extensive education on the scope of occupational therapy practice. Occupational therapists report that the broader scope for occupational therapy intervention is largely misunderstood. Referrals to occupational therapy services from palliative care are predominantly for equipment provision, with little consideration given to the broader positive impact that comprehensive occupational therapy intervention can have on a patient's QOL (Keesing & Rosenwax, Reference Keesing and Rosenwax2011). More extensive education needs to be provided to health service designers as well as members of the healthcare team regarding the complexity and broader scope of the occupational therapist's role. It is anticipated that this would result in more considered, appropriate, and timely referrals to occupational therapists, as well as assisting in improving the patients' QOL.
2. Review available goal-setting tools and introduce goal-setting questionnaire with all appropriate patients admitted to the acute PCU. Unfortunately, due to limitations on allied health funding structures (in the acute PCU), goal setting occurs in an ad hoc manner, with no formal goal-identifying or -setting process. Further research would be beneficial to identify an appropriate goal-setting questionnaire suitable for use with a palliative population. Such a questionnaire should incorporate both QOL and goal setting. An aim is to make goal setting a routine practice in our service provision.
3. Greater focus on occupational participation in the PCU ward environment. “Involvement in occupations facilitated by occupational therapists can lead to feelings of self-worth and well-being” (vanderPloeg, Reference vanderPloeg2001, p. 47). In conjunction with introducing the goal-setting questionnaire on the acute PCU, the writer aims to explore the potential of establishing group activity programs on PCU with the aim to align all therapy toward the achievement of each individual's occupational goals.
4. Continue campaigning at the state and national levels to advocate for development of occupational therapy positions based in community palliative care organizations. The often extreme nature of an admission diagnosis to the acute PCU means that it is most difficult and often impractical to provide occupation-based interventions in the inpatient palliative care setting. The writer believes that greater focus should be paid to occupational participation when the patient is medically well and functioning within their local community; however, community palliative care-based occupational therapy positions (within metropolitan Melbourne) are underresourced or nonexistent. By increasing awareness of the scope of the occupational therapist role in the palliative care setting, and through campaigning at the state and national levels to include occupational therapy in community palliative care service design, it is hoped that comprehensive occupational therapy services will eventually be available to all palliative patients, regardless of whether they are inpatients or living within the community.
CONCLUSION
It is evident that occupational therapy can play a much broader role in supporting the acute PCU goals of care and in facilitating the achievement of better patient QOL through utilization of goal setting and occupational participation within the palliative care ward environment. Unfortunately, most modern health services (in Victoria) are not resourced to allow occupational therapists to facilitate this additional task within the standard occupational therapy role of discharge planning.
The recommendations detailed above would combine to further develop awareness of the role of occupational therapy in palliative care. This greater awareness may go on to assist with development of new and innovative occupational therapy roles in both inpatient and community palliative care services, with the greater outcome being better QOL for those living with a life-threatening illness.
DISCLAIMER
The names and timeframes for each case study report have been altered to maintain the privacy and confidentiality of patients and families.
