Palliative care: compassion, care and complexity

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Palliative Care, Braeside Hospital, Hope Healthcare, Sydney; Department of Palliative and Supportive Services, Flinders University; South West Sydney Clinical School, University of NSW.


Palliative care is a complex arena, where basic science and sensitive compassion have an equal footing, reflecting the ever broadening scope and diversity of disciplines involved in maximising function, controlling symptoms and providing support for patients with advanced illness and their families.1 In the setting of active progressive far advanced disease, multidisciplinary care has never been so crucial. This issue of Cancer Forumhighlights some of the more challenging areas for multidisciplinary palliative care and bringing the role of the multidisciplinary team into focus, but also the other services (such as rehabilitation) that support them. Somogyi et al bring the laboratory to the bedside as we broaden our understanding of how the most efficacious pharmacological approaches to pain could be assisted by utilising pharmaco-genomics,2 and Sanderson et al outline the progress in knowledge of the patho-physiology of delirium in advanced cancer.3-5

Delirium, despite being a medical emergency, is under-recognised and undertreated, associated with significant morbidity and is an independent predictor of mortality in advanced cancer patients. Delirium incidence has been posed as a marker of the quality of healthcare and rightly so, as focus on delirium prevention and rapid management has potential to reduce functional and cognitive decline and provide a survival advantage in advanced cancer.6,7

Hewitt et al describe the challenges of lymphoedema management in palliative care.8Intractable breathlessness is a complex and multi-factorial symptom, where severity cannot be determined by the degree of pulmonary function abnormalities or extent of disease; its prevalence increases as disease advances.9,10 It is paramount all cancer professionals have an understanding of the state of the field in the therapeutics for breathlessness. Davidson et al provides us an up-to-date review, so the situation that a person is left to endure their escalating breathlessness does not occur.9,11

In discussing the carer experience in end of life caregiving, Wilkinson cites that the annual replacement value of the vital role carers play in caring for family or friends is over $30.5 billion annually.12,13 A survey of family carers found a phenomenal number – 2.6 million people, (13% of Australians living in households) provided some assistance to those who needed help because of disability or age.14 A national health strategy must pay attention to service models that: support caregivers as those for whom they provide care experience symptom exacerbations and hospitalisations; empower them to manage situations in the home environment to avoid unnecessary hospitalisations; and reduce end-of-life carer burden, stress, anxiety and burnout, and complicated bereavement. The focus should be on proactively assisting the cancer carer and patient to live life as fully as possible in the time they have left.

Rehabilitation, according to Cole, has much to offer cancer patients with physical functioning issues related to nervous and musculoskeletal problems due to cancer or its treatment, as well as the general debility that may be a feature of advanced cancer and its acute medical complications.15 Specialist rehabilitation teams bring their skills to bear to improve the ability of patients to live their daily lives as independently as possible, while the sub-specialty of cancer rehabilitation continues to evolve. As Cole states eloquently: “There is no place for therapeutic nihilism in the presence of physical disability in cancer patients, any more than there is in the presence of disability due to ‘benign’ illnesses”.15Equally, lymphoedema in patients with advanced disease associated with worsening levels of function and dependence, as well as feelings of hopelessness, disgust and social isolation, requires professionals skilled in management strategies that can be provided across inpatient, outpatient and community settings.16

In an article that delves into the essence of suffering, Kearsley challenges health professionals to better understand their patients’ perspective, encouraging us to reflect on the nature of suffering and the patient stories we are privileged to bear witness to every day.17 Kearsley cites the poet Lesley Marmon Silko: “I will tell you something about stories, they aren’t just entertainment. Don’t be fooled. They are all we have, you see, all we have to fight off illness and death”.17,18

The articles in this Forum put forward the challenge to escalate the evidence-base to: provide high quality palliation of complex symptoms of dyspnoea, delirium and lymphoedema; better understand their patho-physiology and; ask us to deepen our individual capacity to be with suffering. The unforgotten primary caregivers who contribute much to the quality of experience of the person with advanced cancer need the right support, information and services, and the person living with advanced cancer needs us to put much focus in maintaining and regaining function for as long as possible.

References

Doyle D. Palliative Medicine: the first 18 years of a new sub-specialty of general medicine. J R Coll Physicians. 2005;35:199 – 205.

2. Somogyi AA and Hardy J. Role of pharmacogenomics in pain therapy: focus on opioids. Cancer Forum. July 2010;34(2): 2.

3. Sanderson C and Agar M. Delirium in advanced cancer. Cancer Forum. July 2010;34(2): 77-82.

4. Somogyi AA, Barratt DT, Coller JK. Pharmacogenetics of opioids. Clin Pharmacol Ther. 2007;81:429-44.

5. Marcantonio ER, Rudolph JL, Culley D, Crosby G, Alsop D, Inouye SK. Serum biomarkers for delirium. J Gerontol A Biol Sci Med Sci. 2006;61(12):1281-6.

6. Inouye SK, Schlesinger MJ, Lydon TJ. Delirium: a symptom of how hospital care is failing older persons and a window to improve quality of hospital care. [Review] [103 refs]. Am J Med.1999;106(5):565-73.

7. Leonard M, Agar M, Mason C, Lawlor P. Reversibility of delirium in terminally ill patients and predictors of mortality. Palliat Med. 2008;22(7):848-854.

8. Hewitt B, Bugden E and Levinson P. Lymphoedema management in palliative care. Cancer Forum. July 2010;34(2):83-85.

9. Booth S, Moosavi S, Higginson R. The etiology and management of intractable breathlessness in patients with advanced cancer: a systematic review of pharmacological therapy. Nature Reviews Clinical Oncology 5. 2008:90-100,doi:10.1038/ncponc1034.

10. Currow D, Smith J, Davidson P, Agar M and Abernethy A. Do the trajectories of dyspnoea differ in prevalence and intensity by diagnosis at the end of life? A consecutive cohort study. Journal of Pain and Symptom Management. 2010;39(4):980-690.

11. Davidson PM and Currow DC. Management of refractory dyspnoea: evidence-based interventions. Cancer Forum. July 2010;34(2):86-90.

12. Wilkinson AM. The carer experience in end-of-life cancer caregiving: a discussion of the literature. Cancer Forum. July 2010;34(2):91-94. 

13. Access Economics. The economic value of informal care. Canberra,Australia: Carers Australia and Access Economics Pty Limited;2005.

14. Holland KE, Blood RW. Carers’ perspectives on caring: A qualitative analysis of open-ended responses to the Carer Health and Wellbeing Index survey 2007. Carers Australia. 2007; Available from: www.carersaustralia.com.au/?/national/section/12:statistics-about-caring. Accessed 20/3/2010.

15. Cole A. Rehabilitation in advanced cancer. Cancer Forum. July 2010;34(2):95.97.

16. Frid M, Strang P, Freidrichsen MJ, Johansson K. Lower limb lymphedema: Experiences and perceptions of cancer patients in the late palliative stage. J Palliat Care. 2006;22(1):5-11.

17. Kearsley JH. The therapeutic use of self and the relief of suffering. Cancer Forum. July 2010;34(2):98-101.

18. Leslie Marmon Silko. Ceremony. New York:The Viking Press;1977.

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