I think therefore I am? – When in Rome

Photo by Zheka Boychenko on Unsplash

People come from many different places each with its own culture. This includes medical cultures and different ways of dealing with end-of-life care situations. I have talked to visiting New Zealand-trained registrars who had visited relatives overseas. One registrar talked about how upset he had been when he visited his grandmother who lived in a residential care facility in Asia. He knew she had end-stage dementia but was shocked by the number of invasive treatments she received as standard care. His grandmother had refused food and drink which is common in end-stage dementia. In the New Zealand setting, this would lead to a conversation in which the family would be prepared for the impending death of their loved one. The patient would be kept comfortable and nature would take its course. Not so for the registrar’s grandmother who had not been able to consent to any treatments for several years. With the approval of the next of kin, a feeding tube was inserted through her abdominal wall into her stomach. This allowed for liquid meal replacements to be pumped directly into her stomach.

This kept her alive and maintained her quantity of life, but this did not improve her quality of life. She remained unable to talk and could not recognise family members. After the registrar visited his grandmother he was upset and tried to convince his relatives to change the grandmother’s management plan, to allow for her to die naturally. He failed to shift his local family’s thinking, as the grandmother was receiving the standard treatment. The local medical culture was one of preserving the quantity of life at all costs, with no adjustment made for quality of life. The registrar was troubled by the medical culture clash.

Patients and their families may experience a medical culture clash when dealing with our local health system. They may find it hard to accept that there are no further treatments available. Helpful friends and family may make things more difficult with their unsolicited advice. “Back home this would never happen. The patient would be on intravenous fluids, and artificial nutrition, and would be having a lot of investigations.” This can make a stressful situation more so. People try to help but the way they do things may increase stress and suffering. Each case needs to be dealt with individually and with respectability.

Palace of Care – Heart Follows Mind

Photo by Kelly Sikkema on Unsplash

Her brain had no trouble accepting what was happening but her emotional heart took longer. The love of her life for over 45 years of marriage was dying. The doctors had warned that he might become confused and agitated as his condition deteriorated. He was comfortable and the pain relief had taken a few days to optimise. He was more relaxed and then deteriorated. He became less lucid as we neared the end of the week.

A clash of cultures became evident thanks to some of the visiting friends of the family. “You have to ask your doctors if they will give infusions to your husband. In China, he would be having lots of intravenous fluids, and other treatments such as tube feeding.”

We had to explain that artificial hydration would be too much for the dying person to handle, and would worsen skin swelling and likely worsen his breathing. We did not want to add to his already heavy burden of symptoms. His wife indicated she understood our rationale. We explained he could die at any time.

Intellectually his family could accept the ongoing bad news, but when it came to emotions it would take much more time. Their loved one was dying and all they wanted to do was to help but didn’t know how to. Mouth care was a task that we delegated to them. Our counsellor was asked to talk to the family.

Their brains understood the words we shared, but their emotional hearts couldn’t understand the language and operated on feelings instead.