It started with a phone call from my mother in December 2014.
My 89-year-old grandfather wasn’t feeling well. My mother wasn’t sure if he should go to the hospital. He had a number of chronic medical conditions and had become increasingly frail over the past several years.
“What should we do?” my mother asked.
When I became a nurse practitioner, friends and family started asking for medical advice about various ailments. It’s sometimes awkward.
“Why don’t you ask Papa what he wants to do?” I said.
I don’t think this was the response my mother wanted. Anyone asking for advice in a situation like this typically wants to hear “go to the emergency room” or “it can wait for the PCP on Monday.” Instead, I was suggesting she have a conversation. After she and I talked, my mother spoke with my grandfather and they decided to see his doctor later that week.
It’s Different When It’s Your Own Family
The phone call left me uneasy. I work in a medical intensive care unit. I spend a lot of time asking frail older adults — and often their families — what kind of medical care they would or wouldn’t want in different situations. I talk about advance directives, code status, and health care proxies all the time. But this was my own grandfather.
Not long after that December phone call, my grandfather began what seemed like a monthly cycle in and out of the hospital. I realized that I didn’t know his wishes if he were unable to speak for himself.
The thought of my grandfather receiving care that he didn’t want horrified me. I’ve watched frail patients suffer through aggressive life-sustaining treatment with little chance of cure. I’ve seen people recover, but many never regain the quality of life they had before they were seriously ill. Throughout all of these situations, I’ve offered comfort to families wracked with guilt or paralyzed by indecision as they attempt to guess the wishes of a loved one.
We needed answers. I called my family members. No one knew the specifics about the kind of care my grandfather wanted.
But whose responsibility was it to ask him? As his granddaughter, I wasn’t sure it was my role. My uncle had told me how upset my grandmother was after I asked if she knew my grandfather’s code status.
As his health care proxy, it made sense for my mother to talk to my grandfather, but she had already expressed uncertainty about having this conversation. I started gently — but persistently — urging her to ask Papa whether he would want to be resuscitated if his heart stopped. During one discussion, my mother said, “Isn’t this something the doctor should ask?”
I know clinicians don’t always address these issues with patients clearly, early enough, or at all. I explained to my mother that you can’t always rely on the health care system to have these difficult conversations.
The Conversation Project (TCP) helped me find the right words to encourage my mother to talk to her father. I sent my mother one of their videos. TCP encourages people to talk about their end-of-life care wishes by starting with defining their values and preferences. They advise asking loved ones what matters most to them and then listening.
Looking at the TCP resources helped us shift our focus. I told my mother she didn’t have to talk with Papa about chest compressions or breathing tubes. Instead, she could begin by asking if we should take him to the hospital the next time he was sick. I also helped my mother understand that she cared more about making sure his wishes were followed than his doctors ever could.
Simplifying the discussion and focusing on the role she needed to play seemed to empower my mother. It also helped me. I didn’t want to be the medical expert in this situation. I just wanted to be a granddaughter.
To my surprise, my mother sat down with Papa without me. He told her that being home was what mattered most to him.
Respecting Papa’s Wishes
Papa went home on hospice care after what turned out to be his last hospital admission. It was difficult to help him be at home. My mother, who was there almost daily, coordinated the hospice care and family visits. My father, Papa’s son-in-law, helped him to and from the bathroom when he could walk. When Papa became too weak, my father helped him stand. In the end, when my grandfather was only eating a few bites a day, I spoon fed him strawberry ice cream, challah bread with cream cheese, and whole milk. Caring for him at home was messy, but it was also a privilege to respect Papa’s decision to die at home. We took comfort in that.
My grandfather had five weeks at home before he died. We surrounded him with family and friends. My uncle brought some of the best food that Brookline and Newton had to offer. My brother and cousins came by and shared their positive energy. Many people visited who he hadn’t seen for years.
We told stories. We shared smiles. Laughter often filled the room. People brought food, flowers, and gifts, including a lot of Red Sox gear, and spent time with him in the familiarity of his own home.
My family’s experience changed the way I provide care. I appreciate more deeply that everyone’s choices and perspectives will be different. I try to listen more.
Having these conversations is the most meaningful aspect of my job. I see the difference it makes when families have end-of-life care conversations and when they don’t. It’s hard either way, but — when the end comes — there’s less stress and shock when the patient has had a chance to express what they want, and the family can do their best to carry out their wishes.
I bring up my family’s experience with patients and families when it seems appropriate. Some people seem to take comfort in knowing that I have an idea of what they’re going through on a personal level. I can’t tell people what path to choose, but at least I can explain what each path might look like.