Enabling Participation in Meaningful and Essential Occupations in End-of-Life Care

Abstract

People receiving palliative care are living while they die. Evidence demonstrates that they strive to continue participation in valued and essential occupations at this time of life for as long as possible. Further, emerging research suggests that it is through the process of occupational engagement that people adjust to functional decline at the end of life. Occupational therapists (OTs) play a significant role in optimizing a person’s occupational performance in order to enable participation during this time. Management of symptoms such as refractory breathlessness needs to occur within the context of valued and essential occupational activities.

The patients and carers were particularly keen on some of the non-pharmacological self-management strategies taught…and that they were ‘listened to’ about their breathlessness. Time and again there were comments on the usefulness of the hand-held fan from all participants.(Booth et al. 2006)

Appendices

The Case Study of Craig: Management of Breathlessness to Optimise Occupational Participation

Keywords

Breathlessness, palliative care, occupational participation, task analysis

Introduction

The theme of this case study is about interventions to optimise occupational participation for a person with advanced lung cancer.

The students’ tasks include:

• Understanding the meaning and goals of palliative care

• Understanding epidemiology of symptoms in advanced lung cancer

• Non-pharmacological interventions for refractory breathlessness

• Identifying key occupational therapy principles in palliative care

• Develop an understanding about the experience of breathlessness and importance of participation at the end of life

As a starting point, students should use the following references to gather background information.

Important references are:

Abernethy A, Shelby-James T, Fazekas B, Woods D, Currow D (2005) The Australia-modified Karnofsky performance status (AKPS) scale: a revised scale for contemporary palliative care clinical practice [ISRCTN81117481]. BMC Palliat Care 4(1):7

Bausewein C, Booth S, Gysels M, Higginson IJ (2011) Non-pharmacological interventions for breathlessness in advanced stages of malignant and non-malignant diseases. The Cochrane Library. doi:10.1002/14651858.CD005623.pub2

Gysels M, Higginson I (2011) The lived experience of breathlessness and its implications for care: a qualitative comparison in cancer, COPD, heart failure and MND. BMC Palliat Care 10(1):15

La Cour K, Josephsson S, Tishelman C, Nygard L (2007) Experiences of engagement in creative activity at a palliative care facility. Palliat Support Care 5(3):241–250. doi:10.1017/S1478951507000405

Lyons M, Orozovic N, Davis J, Newman J (2002) Doing-being-becoming: occupational experiences of people with life-threatening illnesses. Am J Occup Ther 56(3):285–295

Svidén GA, Tham K, Borell L (2010) Involvement in everyday life for people with a life threatening illness. Palliat Support Care 8(3):345–352. doi:10.1017/S1478951510000143

WHO (2002) National cancer control programmes: policies and managerial guidelines, 2nd edn. WHO, Geneva

Overview of the Content

Major Goals of the Actual Intervention

The major goals of occupational therapy intervention in palliative care are:

• 1. Optimise occupational participation with increasing symptom burden

• 2. Facilitate mastering of breathlessness management techniques

• 3. Facilitate participation in essential and valued occupations

Learning Objectives

By the end of studying this chapter, the learner will:

• Be able to use the literature to inform a palliative care approach to the occupational therapy management of refractory breathlessness

• Be able to apply the Case Study Method in clinical reasoning to the case study and similar clinical situations

• Write a report identifying occupational therapy interventions to manage refractory breathlessness

The Background History of Clinical Case Study

Personal Information

Craig is a 57-year-old married man, who was working as a bus driver and until recently he was active in family activities.

Medical diagnoses and prognosis:

Craig came to hospital with acute shortness of breath (SOB) and found to have a pleural effusion, which was drained. He was subsequently diagnosed with advanced metastatic lung cancer and underwent a trial of palliative chemotherapy. However, his disease continued to progress throughout the chemotherapy.

Occupational status:

Craig requires increasing assistance with activities of daily living due to pain and breathlessness on exertion. He has an Australia-modified Karnofsky Performance Status (AKPS) score of 60, which means he is generally independent with self-care but requires occasional assistance. Unable to work due to symptoms; he relies on his wife to complete domestic activities of daily living. He has ceased driving due to increasing breathlessness.

A personal care assessment was completed with Craig in his home to evaluate ways to manage his breathlessness . Craig stood to bathe in a shower over the bath and used no assistive equipment. He rushed bathing to complete it as quickly as possible, subsequently experiencing severe breathlessness which he found very distressing. His wife assisted with drying and dressing due to his fatigue and breathlessness. He uses the basin to assist with his toilet transfers.

Craig and his wife enjoy visiting their local café for breakfast every Saturday morning. However, Craig becomes breathless when walking for more than 50 m on flat ground and is exhausted on arriving at the cafe. Craig wants to continue to visit the cafe with his wife and also wants to be able to take a shower and dress himself daily without experiencing severe breathlessness.

The Students Report:

The following guiding questions have been identified in developing possible interventions and solutions for Craig.

• What are the important issues and goals for the OT to focus on with Craig?

• What are the common non-pharmacological interventions the OT can use to manage Craig’s refractory breathlessness?

• What evidence is there to support these interventions?

• What are the short and long-term goals for Craig and what time frames would they be set in?

• What interventions would assist Craig in meeting his identified goals?

• People with advanced disease experience multiple symptoms. How might the following restrict occupational performance:

  • Cancer cachexia

  • Pain from bony metastases

• What OT interventions would assist management of these symptoms?

• How can the OT address Craig’s distress?

• Describe the implications of facilitating patient-centred goals in a palliative care setting. Do they always align with therapist goals? When is this problematic or otherwise?

In addition to the reference list of this chapter the following references are recommended:

BIS (2013) Breathlessness Intervention Service (BIS). http://www.cuh.org.uk/addenbrookes/services/clinical/breathlessness_intervention_service/breathlessness_index.html

Fearon K, Strasser F, Anker SD, Bosaeus I, Bruera E, Fainsinger RL et al (2011) Definition and classification of cancer cachexia: an international consensus. Lancet Oncol 12(5):489–495. doi:http://dx.doi.org/10.1016/S1470–2045(10)70218-7

Galbraith S, Fagan P, Perkins P, Lynch A, Booth S (2010) Does the use of a handheld fan improve chronic dyspnea? A randomized, controlled, crossover trial. J Pain Symptom Manage 39(5):831–838

Giacomini M, DeJean D, Simeonov D, Smith A (2012) Experiences of living and dying with COPD: a systematic review and synthesis of the qualitative empirical literature. Ont Health Technol Assess Ser 12(13):1–47

Legg L, Drummond A, Leonardi-Bee J, Gladman JR, Corr S, Donkervoort M, Langhorne P (2007) Occupational therapy for patients with problems in personal activites of daily living after stroke: a systematic review of randomised trails, BMJ 333(7626):922. doi:10.1136/bmj.39343.4668663.55

Louie SW (2004) The effects of guided imagery relaxation in people with COPD. Occup Ther Int 11(3):145–159. doi:10.1002/oti.203

Migliore A (2004) Improving dyspnoea management in three adults with chronic obstructive pulmonary disease. Am J Occup Ther 58:639–646

Miller J, Hopkinson C (2008) A retrospective audit exploring the use of relaxation as an intervention in oncology and palliative care. Eur J Cancer Care 17(5):488–491. doi:10.1111/j.1365–2354.2007.00899

Norweg AM, Whiteson J, Malgady R, Mola A, Rey M (2005). The effectiveness of different combinations of pulmonary rehabilitation program components: a randomized controlled trial. Chest 128(2): 663–672

Norweg A, Bose P, Snow G, Berkowitz ME (2008) A pilot study of a pulmonary rehabilitation programme evaluated by four adults with chronic obstructive pulmonary disease. Occup Ther Int 15(2):114–132. doi:10.1002/oti.251

Schleinich M, Warren S, Nekolaichuk C, Kaasa T, Watanabe S (2008) Palliative care rehabilitation survey: a pilot study of patients’ priorities for rehabilitation goals. Palliat Med 22(7):822–830 doi:10.1177/0269216308096526

Schwartzstein RM, Lahive K, Pope A, Weinberger SE, Weiss JW (1987) Cold facial stimulation reduces breathlessness induced in normal subjects. Am Rev Respir Dis 136(1):58–61. doi:10.1164/ajrccm/136.1.58