How to conduct discussion about mortality can be the greatest challenge in a health-care provider’s career. My new book, Life After the Diagnosis: Expert Advice for Living Well with Serious Illness for Patients and Caregivers (Da Capo Lifelong; February 14, 2017) is a guide for professionals, families and patients when faced with poor prognosis and the need to talk about chronic and end-of-life issues. After 27 years of practice in palliative care, I have gained valuable knowledge and unique insights and how to best address these concerns. Since I can’t personally talk to everyone, I’ve written this book—to give all the same information that I give to those that personally contact me. Chapter 14, Difficult Treatment Decisions and Discussions speaks to culture, religion and other traditions that must be handled mindfully when working with aging patients.
Serious illness doesn’t discriminate; it strikes patients of all ethnic and cultural backgrounds. Members of particular groups frequently have traditions that govern how they deal with serious illness, dying, and death.
In today’s Western cultures, the wishes of seriously ill people are paramount. Our laws and institutions are geared to see that their directives are carried out. In other cultures, decisions are based on what’s best for the family and the individual’s interests are less important. The patient’s family, not the patient, is expected to make the important decisions including treatment and end-of-life decisions.
If you want your family to make those decisions, make your wishes clear. Put them in writing. Make sure that they’re in your medical record. Tell your family, friends, and medical providers that you authorize your family to make all the necessary decisions regarding your treatment and end-of-life.
When it comes to cultural differences, my major concern is that assumptions will be made that don’t reflect patients’ wishes.
I was treating Mae, a Chinese-American patient in the ICU when it became clear that she had only a matter of days left. I asked her nurse, who was also Chinese-American, if she knew whether anyone had asked about Mae’s spiritual preferences. Did she want to see a spiritual leader or have particular customs followed? “Oh, no,” the nurse replied, “We Chinese aren’t religious.” Her answer surprised me. It was not what I had experienced. So I asked Mae’s family, learned that they were Catholic, and was told that both Mae and her family wanted her to receive the Sacrament of the Sick, which we soon arranged
You can’t assume that you know about someone because you know their ethnicity, country of origin, religion, or primary language. You certainly don’t know their preferences for something as personal as medical care and spiritual needs at the end of life.
Although cultural traditions play a role in making treatment decisions, that role is not absolute. For example, in some cultures the tradition is to withhold unfavorable information from patients. In those cultures physicians don’t discuss diagnosis and prognosis directly with the patient. And yet, cultures are not homogeneous. Opinions diverge even in the most traditional communities. They are never 100% one way or the other. Ultimately, treatment and end-of-life decisions are personal and vary with each case.
I tell my students to be curious. To ask respectful questions like, “What do I need to know about your culture or religion to make sure I take good care of you?” Share these traditions and practices with your doctors and nurses. If the person who is ill in your family is potentially more traditional than you are, you can ask them the same question- “Grandma, what are the traditions in our family that are important when taking care of people who are sick?” This question about traditions is another opportunity for the person who is sick to find meaning, purpose, legacy and dignity by sharing family and cultural traditions.
On the other hand, I sometimes find that people don’t want straight talk. Some people prefer to be a bit in the dark, to live with some denial. That’s OK, too. The point is that you can never know what someone will say. That goes for me as a doctor and for family members. The goal is not to assume what someone wants, but to ask.
At 84, Mr. Wong, was admitted to the hospital with right-sided abdominal pain. An ultrasound revealed a mass in his gall bladder that looked like cancer. His family told us not to tell him what we found because he wouldn’t be able to take such bad news. They said that in their tradition the family would make all medical decisions for him.
One morning, when Mr. Wong was feeling better, I visited him. He was in bed and a Mandarin interpreter was with his family in her room. I wanted to respect the family’s wish, but I also wanted to respect Mr. Wong. So I said, “Mr. Wong, I have information about what’s going on. Some people want me to tell them everything while others prefer that I only speak to their families. How do you feel?”
Mr. Wong thought for a moment and then spoke in Mandarin, which the interpreter translated. “You know doctor, everyone has to die someday.” I was stunned. I hadn’t said anything about dying. I regrouped and said that yes he was right but what I wanted to know was how he wanted me to handle new information about his condition and whether he wanted me to tell him or his family. “Oh doctor,” he replied, “you will tell me everything. And by the way, it’s OK if you also want to tell my family.”
Mr. Wong went on to tell us that he felt better and wanted to go home. He declined a biopsy that his family had been ready to consent to. Mr. Wong’s family thought they were protecting him, but they complicated the situation and made it more difficult. They nearly exposed him to a biopsy that he didn’t want.
The US and every state have laws that mandate that healthcare providers make interpreters available for any person who doesn’t speak English. These laws are so important because they support better patient-doctor and nurse communication, which is the backbone of good medical care.
Excerpted from Life after the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers by Steven Z. Pantilat, MD. Copyright © 2017. Available from Da Capo Lifelong, an imprint of Perseus Books, LLC, a subsidiary of Hachette Book Group, Inc.