Weighing self-determination against blissful ignorance at death’s door

I had a young cousin with thalassemia major. She had the textbook chipmunk facies, but you otherwise would not have known she was ill. Despite requiring blood transfusions every 3 weeks, she led a fairly normal life, graduating from college and holding down a good job.

In 2012, we found out that she had hepatitis C. She received treatment, but it did not succeed. By this point, she’d already developed cardiomyopathy, and she would later develop atrial fibrillation and heart failure. Earlier this year, Gilead was kind enough to give her its new drug sofosbuvir for free, but given her comorbidities, she could not tolerate it.

Recently, she was discharged after a protracted admission for heart failure. At that point, her hematologist, cardiologist, and hepatologist held a family meeting with her parents and siblings and pointed out the futility of her situation. Her family brought her home. They did what Filipino families in desperation do. They prayed and reached out to a “faith healer” – someone who uses poultices made from taro leaves, mutters incantations, and provides homemade remedies for any ailment. From a patient’s perspective, they provide hope where no one else will; from an outsider’s perspective, they are simply preying on the vulnerable.

Despite her family’s efforts, my cousin died about a month after coming home. She was only 27 years old. She woke up one morning feeling short of breath, weighed down by anasarca. She was brought to the hospital. Surrounded by her family, she asked her brother why he was crying. She asked her family not to bother calling her boyfriend; she’d talk to him when he came around. Then she fell asleep for the last time.

She did not know that she was dying. Her family had chosen to keep this from her.

When I learned about the circumstances of her passing I was angry and indignant at first. Why wouldn’t they tell her? What about patient self-determination and letting her be the judge of whether she wanted to be taken back to the hospital? Why would they deprive her of the opportunity to say goodbye? How is it that this sort of paternalistic, “I know what’s best for you” attitude still exists?

But I tried to put myself in her shoes, and it didn’t take long for me to question my certitude.

We romanticize the last moments of our lives. We imagine it to be filled with equanimity, a dignified acceptance of the inevitable. But that cannot always be the case. I can just as easily imagine myself to be angry, bitter, and, worst of all, fearful. Overwhelmed with sadness that it makes my last moments joyless rather than joyful.

Dying is intensely personal. Billions of people have led lives and reached endings unique to them. We may make noise about patient self-determination, but really, what is that if not just another manifestation of our arrogance that we know best? Is not insisting on patient self-determination just the other side of the same protect-the-patient-by-withholding-information coin?

I was humbled by my own ambivalence toward how her family handled her death, and a bit ashamed that I would be so quick to judge them. They did what they thought was best; who am I to question that? I may understand the science of life and death, but I cannot claim to understand living and dying.

Dr. Chan practices rheumatology in Pawtucket, R.I.

I had a young cousin with thalassemia major. She had the textbook chipmunk facies, but you otherwise would not have known she was ill. Despite requiring blood transfusions every 3 weeks, she led a fairly normal life, graduating from college and holding down a good job.

In 2012, we found out that she had hepatitis C. She received treatment, but it did not succeed. By this point, she’d already developed cardiomyopathy, and she would later develop atrial fibrillation and heart failure. Earlier this year, Gilead was kind enough to give her its new drug sofosbuvir for free, but given her comorbidities, she could not tolerate it.

Recently, she was discharged after a protracted admission for heart failure. At that point, her hematologist, cardiologist, and hepatologist held a family meeting with her parents and siblings and pointed out the futility of her situation. Her family brought her home. They did what Filipino families in desperation do. They prayed and reached out to a “faith healer” – someone who uses poultices made from taro leaves, mutters incantations, and provides homemade remedies for any ailment. From a patient’s perspective, they provide hope where no one else will; from an outsider’s perspective, they are simply preying on the vulnerable.

Despite her family’s efforts, my cousin died about a month after coming home. She was only 27 years old. She woke up one morning feeling short of breath, weighed down by anasarca. She was brought to the hospital. Surrounded by her family, she asked her brother why he was crying. She asked her family not to bother calling her boyfriend; she’d talk to him when he came around. Then she fell asleep for the last time.

She did not know that she was dying. Her family had chosen to keep this from her.

When I learned about the circumstances of her passing I was angry and indignant at first. Why wouldn’t they tell her? What about patient self-determination and letting her be the judge of whether she wanted to be taken back to the hospital? Why would they deprive her of the opportunity to say goodbye? How is it that this sort of paternalistic, “I know what’s best for you” attitude still exists?

But I tried to put myself in her shoes, and it didn’t take long for me to question my certitude.

We romanticize the last moments of our lives. We imagine it to be filled with equanimity, a dignified acceptance of the inevitable. But that cannot always be the case. I can just as easily imagine myself to be angry, bitter, and, worst of all, fearful. Overwhelmed with sadness that it makes my last moments joyless rather than joyful.

Dying is intensely personal. Billions of people have led lives and reached endings unique to them. We may make noise about patient self-determination, but really, what is that if not just another manifestation of our arrogance that we know best? Is not insisting on patient self-determination just the other side of the same protect-the-patient-by-withholding-information coin?

I was humbled by my own ambivalence toward how her family handled her death, and a bit ashamed that I would be so quick to judge them. They did what they thought was best; who am I to question that? I may understand the science of life and death, but I cannot claim to understand living and dying.

Dr. Chan practices rheumatology in Pawtucket, R.I.

I had a young cousin with thalassemia major. She had the textbook chipmunk facies, but you otherwise would not have known she was ill. Despite requiring blood transfusions every 3 weeks, she led a fairly normal life, graduating from college and holding down a good job.

In 2012, we found out that she had hepatitis C. She received treatment, but it did not succeed. By this point, she’d already developed cardiomyopathy, and she would later develop atrial fibrillation and heart failure. Earlier this year, Gilead was kind enough to give her its new drug sofosbuvir for free, but given her comorbidities, she could not tolerate it.

Recently, she was discharged after a protracted admission for heart failure. At that point, her hematologist, cardiologist, and hepatologist held a family meeting with her parents and siblings and pointed out the futility of her situation. Her family brought her home. They did what Filipino families in desperation do. They prayed and reached out to a “faith healer” – someone who uses poultices made from taro leaves, mutters incantations, and provides homemade remedies for any ailment. From a patient’s perspective, they provide hope where no one else will; from an outsider’s perspective, they are simply preying on the vulnerable.

Despite her family’s efforts, my cousin died about a month after coming home. She was only 27 years old. She woke up one morning feeling short of breath, weighed down by anasarca. She was brought to the hospital. Surrounded by her family, she asked her brother why he was crying. She asked her family not to bother calling her boyfriend; she’d talk to him when he came around. Then she fell asleep for the last time.

She did not know that she was dying. Her family had chosen to keep this from her.

When I learned about the circumstances of her passing I was angry and indignant at first. Why wouldn’t they tell her? What about patient self-determination and letting her be the judge of whether she wanted to be taken back to the hospital? Why would they deprive her of the opportunity to say goodbye? How is it that this sort of paternalistic, “I know what’s best for you” attitude still exists?

But I tried to put myself in her shoes, and it didn’t take long for me to question my certitude.

We romanticize the last moments of our lives. We imagine it to be filled with equanimity, a dignified acceptance of the inevitable. But that cannot always be the case. I can just as easily imagine myself to be angry, bitter, and, worst of all, fearful. Overwhelmed with sadness that it makes my last moments joyless rather than joyful.

Dying is intensely personal. Billions of people have led lives and reached endings unique to them. We may make noise about patient self-determination, but really, what is that if not just another manifestation of our arrogance that we know best? Is not insisting on patient self-determination just the other side of the same protect-the-patient-by-withholding-information coin?

I was humbled by my own ambivalence toward how her family handled her death, and a bit ashamed that I would be so quick to judge them. They did what they thought was best; who am I to question that? I may understand the science of life and death, but I cannot claim to understand living and dying.

Dr. Chan practices rheumatology in Pawtucket, R.I.