Preferences regarding disclosure of prognosis and end-of-life care

Dr Waleed Zafar, Dr Haroon Hafeez and Dr Aasim Yusuf, Shaukat Khanum Memorial Cancer Hospital & Research Centre, Lahore, Pakistan, explain the background to their longer article selected as Editor’s Choice in the July edition of Palliative Medicine.

Dr Waleed Zafar

Dr Waleed Zafar

Arguably, one of the most impactful Mughal miniature paintings is ‘The death of Inayat Khan’ by Balchand. 1,2 It is a strikingly realistic depiction of a man in an advanced stage of illness (possibly cancer). A fascinating aspect of this painting is the way it captures not only the subject’s emaciation, pain, and anguish, but also the care with which he sits propped up in a clean and comfortable bed. The painting evokes a strong feeling of empathy with the subject and forces one to consider what must be going on in his mind. We refer to this painting because it is an unusually frank look at a person approaching his natural death to come out of a cultural milieu that was, and remains, reticent on this topic.

Dr Haroon Hafeez

Dr Haroon Hafeez

Dr Aasim Yusuf

Dr Aasim Yusuf

In our work caring for cancer patients at Shaukhat Khanum memorial cancer hospital and research centre (SKMCH&RC) in Lahore, Pakistan, we remain constantly aware that there is very little research from our part of the world on what cancer patients’ expectations are from palliative and end-of-life care. SKMCH&RC is the only cancer specialized hospital currently operating in Pakistan, and one of very few centres that offers specialist palliative care in the country. Annually, we treat around 7,000 new cancer patients and provide palliative care to around 1,600 patients.

Govardhan. The Dying Inayat Khan, ca 1618, Boolean Library, Oxford (Wikimedia Commons)

Govardhan. The Dying Inayat Khan, ca 1618, Boolean Library, Oxford (Wikimedia Commons)

In July 2013, we started discussing the need for a study to better understand two related issues. The first was how to effectively communicate with our patients and their families regarding disease prognosis. Specifically, we wanted to learn how detailed our patients want us to be in discussing disease prognosis especially since a large proportion of our patients have low literacy levels. The second issue was to try to understand some of the key expectations that our patients have regarding end-of-life care. We also wanted to explore if these preferences regarding communication and care varied by patients’ demographics, type of cancer, and personality characteristics (self-efficacy, locus of control, and religiousness).

Shaukat Khanum Memorial Cancer Hospital & Research Centre, Lahore, Pakistan

Shaukat Khanum Memorial Cancer Hospital & Research Centre, Lahore, Pakistan

We reviewed available instruments developed to measure some of these domains but found that none of them fitted our needs. So a major undertaking was the development of the questionnaire in Urdu. At the outset, we decided that it was better to design a single instrument with multiple domains that addressed the key themes that we wanted to explore and to supplement our findings from the questionnaire with in-depth interviews with patients, their families, and palliative nurses. Such a mixed-methods study has provided us with very rich data that we are in the process of analyzing. This study presents the results from the quantitative portion of our research project.

We hope that our study will contribute to the growing literature on tailoring palliative care to specific patient needs and expectations. We also hope that Palliative Medicine will continue to offer us, its readers, opportunities to understand how palliative care is developing and taking root in lesser-developed parts of the world.

References

  1. Thackston, WM (translator). The Jahangirnama: Memoirs of Jahangir, Emperor of India. New York: Oxford University Press; 1999: p. 279-280.
  2. Smart E. The death of Inayat Khan by the Mughal artist Balchand. Artibus Asiae 1999; 58: 273-279.

Read the full article in Palliative Medicine
This blog post relates to the longer article, ‘Preferences regarding disclosure of prognosis and end-of-life care: A survey of cancer patients with advanced disease in a lower-middle-income country’ by Waleed Zafar, Haroon Hafeez, Arif Jamshed, Mazhar Ali Shah, Ainul Quader and M Aasim Yusuf, Palliat Medicine July 2016 vol. 30 (7) 661-673. Published online before print January 14, 2016, doi: 10.1177/0269216315625810.

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This entry was posted in EAPC-LINKED JOURNALS, Palliative Medicine: Editor's Choice, PATIENT & FAMILY CARE, RESEARCH and tagged , . Bookmark the permalink.

1 Response to Preferences regarding disclosure of prognosis and end-of-life care

  1. Thanks you, that was an awesome post.

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