Meaningful end-of-life care: Advance care planning within the South Asian community
News & Updates | June 16, 2023 | Sarah Dobec
Dr. Amrish Joshi is a palliative physician with a background in family medicine. He has conducted research on increasing cultural knowledge and sensitivity in palliative care services and is sharing the findings of a qualitative study on Advance Care Planning in South Asian communities.
There is a tool we use in Vancouver Coastal Health called the Serious Illness Conversation Guide (SICG) that aims to improve Advance Care Planning conversations. The conversations can often elicit a person’s value, beliefs and goals so they get the care they want. The tool was developed at Harvard by Atul Gawande and his team. It is a very helpful tool in health care, but I began to question if the language and approach was effective with all people. My background is a South Asian who was born in the UK, and I collaborated with three colleagues with South Asian, Chinese and Filipino backgrounds. We wanted to know what people with South Asian heritage thought about it, and did it meet their needs.
We did not set out to produce a ‘cookbook’ that directs you to do one thing based on a person’s heritage, but instead we looked at cultural awareness, cultural sensitivity and how different communities access health care.
We arranged focus groups of English-speaking Canadians of South Asian background, understanding that this is a very broad category. We spoke with 18 people over 5 separate focus groups, and we didn’t separate them by age, even though we are aware that there are generational differences.
Based on the questions from the SICG, we role played a conversation between a patient and doctor. Along the way we would stop and ask the participants what they thought of the process and wording to get feedback. We recorded it, transcribed it and then did a qualitative analysis; we came out with two major themes, one cultural and the other practice-based approach.
In Western medicine, there is emphasis on the ethical framework that includes autonomy, beneficence, non-maleficence, and justice; but a lot of weight is given to autonomy. For some within the South Asian community, they may be used to a paternalistic approach to care and the concept of giving the patient the decision about their care is unfamiliar. They may ask, “Why is the doctor asking me what care I should accept? Don’t they know what they are doing?” Another difference with respect to autonomy is that in some South Asian communities it is the whole family that are the decision-makers. Many of the questions in the SICG could be stated as being individualistic, and this came up in the study quite a bit. “My family was here before me, and they will be here after me. I am part of this continuing community, so decisions are made collectively.”
Another interesting observation was the concept of the ‘facade.’ Family members don’t talk about their loved one’s illness or care so as not to add more distress to their situation. Often times, the family will go as far to say, “Don’t worry, you will live for many years more.” This is not meant to be malicious, but instead comes from a place of love. You can’t take the individual out of the family, they belong to the family, so often their health care decision which is best for them is what’s best for the family.
Sharing the knowledge we gained from the study gives other health care professionals information to consider when they experience barriers during conversations about end-of-life care. The way we interpret bad news, serious illness conversations, and death and dying is dependent on our culture: ideals, values and beliefs. You need to understand this to be able to give culturally appropriate care.
With everyone, it’s about taking a step back and asking yourself why a conversation is going in a certain direction, and taking the time to meet the patient and the family where they are at. This is part of good palliative care and the more we build the skills to understand a person’s values and beliefs, the better the care becomes.