Mrs. Hii is an 85-year-old Chinese lady who speaks Mandarin when she speaks at all. She lives in a big condominium apartment with her husband who is a long-retired health professional. Poor Mrs. Hii has an incurable and advanced relentlessly degenerative nervous system disease, so she needs two people to assist her to get back and forth from the bathroom, and a mechanical lift to get in and out of bed. Her ability to mobilize is slowly getting worse. It’s difficult to know (with the language barrier, plus her being naturally laconic, plus the effect of her disease on the mechanism of making words) what’s going on in her thinking, but I’m told she knows her name and recognizes relatives, but would not know the name of the city or the year, let alone the date. Mild-to-moderate dementia we would call it.
I’m socialized in the laissez-faire school of care for frailty. I’m keen on avoiding futile medical investigation and treatment, and I try to offer my patients care that leads to comfort and function, avoiding high-tech medical rescue where it wouldn’t improve the remainder of their life. If that’s what they want. But I’m also a believer in letting people, including people’s “circle of care” (friends, relatives, neighbors, and society), decide what happens, especially near the end of their lives. But sometimes apparently purely ethnic-content questions are really something simpler.
With Mrs. Hii I thought I faced an ethics dilemma. I expect she will die of her disease, treated according to my usual practice and the prevailing ideology in Canada, within a couple of years. Her life could be lengthened by artificial means like antibiotics for infections once she is no longer apparently aware of her surroundings, or by feeding with a tube, or even being on a respirator, none of which anyone in the healthcare system I work in would recommend or in some cases even allow. But based on his instructions and conversation I had had (all through an interpreter) this is what I was sure her husband and family would expect and insist on.
The husband had been checking her blood pressure several times a day and has been determined to maintain it within preventive guidelines for younger people, even though her disease causes unpredictable blood pressure drops, sometimes leading to fainting. Mrs Hii takes three blood-pressure-lowering medicines, and nothing I have told the husband, including the opinion of a local neurology expert that too-low blood pressure may kill his wife sooner than too-high, changes his opinion. Mr. Hii also wants to keep broad-spectrum antibiotics on hand to give when her sputum turns dark-coloured, which it does regularly because her gag reflex is impaired and she frequently aspirates (breathes in) secretions and food from her mouth.
During many visits to their home I felt a shift in my own conviction about this situation. It seemed that Mr. Hii was determined to do for his wife the things that best expressed protection of her. In insisting on textbook care and resisting arguments against it, I felt he was honouring her and their life together in the best way he could. Loving her in other words.
So I held back, mostly, from getting strident about the unnecessary antibiotics and the dangerous blood pressure pills. I had told Mr Hii through the family’s interpretation of the futility and danger of what we were doing, but until recently I couldn’t bring myself to try to force my patient’s husband to abandon his wife to an ideology he fears and doesn’t trust. I shook the old lady’s hand and patted her gently on the shoulder, shook her husband’s hand, smiled and nodded at both of them, and acceded to the old man’s wishes. I was worrying that in the future we would face some more serious problems of this kind and I hoped I could succeed in keeping Mrs. Hii comfortable during any coming futile life-sustaining heroics. But I was determined to respect what I felt was a cultural difference deeply involving the relationship between my patient and her husband which I couldn’t properly understand.
Last week however there was an interesting epiphany. I asked the daughter-in-law straight out whether her father-in-law understood how long his wife is likely to live. The daughter-in-law replied that, no, they hadn’t had the heart to tell him. I realized that his insistence on textbook care for his wife wasn’t necessarily “cultural” at all, but just based in ignorance. Although I thought I had made everything clear, my duty to inform still hadn’t been fulfilled.
I sat the daughter down and explained carefully that a best estimate of her mother’s life expectancy is 1-2 years. The time it would take for elevated blood pressure to cause complications would be more like about 10 years, I said. I explained to her that her father-in-law’s participation in decision-making for his wife’s care needed to be based in realistic information. She promised to explain all this to the old man.
Lesson one here: there’s nothing quite like information. Even when it has to be translated, and even when it’s passed from one cultural frame of reference to a completely different one. As it happened with Mrs. Hii that trumped lesson two, which was that you never completely get yourself in the other person’s shoes, especially if they’ve worn them on a voyage from far away.