Post 18: Decisions Based on Love Can Be the Hardest to Support
Updated: Dec 8, 2022
I have seen my healthcare colleagues become so focused on treating a patient, they forget that the patient is a person with a family.
I was a medical student when the "barely elderly" former high school football coach, exhausted from repeated hospitalizations, repeated complications, and repeated discomforts, one of which was being attached to a dialysis machine three times each week, uttered the words, "I'm tired. I don't want to keep doing this," to one of the rounding physicians at the academic hospital. It could have been an intern, a resident, or a fellow (physicians at different stages of training). Regardless, the news spread quickly among the primary medical team.
"We must honor his wishes! His family keeps telling him to fight, but that's not what he wants. We must let his family know."
Asking his son to come in "today!" for an "important conversation!" became imperative. The medical team huddled around the man's hospital bed on one side, spilling to the foot of the bed. His son stood on the other side.
The resident physician listed the man's recent hospitalizations and now ongoing issues. "He told us he's tired. He told us he doesn't want to keep doing this." The resident physician looked at the son expectantly, really only expecting one answer, "Okay, sure, I want to do as he says."
Instead, the son paused, looked his dad in the eyes, and firmly said, "Coach, keep fighting! We keep fighting," and his dad closed his eyes and silently nodded.
Everyone on the medical team was flummoxed.
The medical team first attempted to get the son to agree with their medical recommendations based on what they viewed as their patient's goals, to consider transitioning to comfort focus, to let go of dialysis, and to allow the patient to die in peace. When the son disagreed, the medical team became politely outraged on behalf of their patient. "When you are not here," they told the son, "he gets tears in his eyes and tells us he does not want any of this. It is hard to see."
With a sense of helplessness (which can become demoralizing over time), injured ego ("why does the son not believe us? why does he not do as we say?"), and a focus narrowed to just the patient's needs, the medical team continued to pit "patient" against "family" in their conversations. "He wants this, but his son wants that. He will only do what his son wants! So we're doing that."
I see now how much a palliative care consultation (read Post 1: What Exactly Does a Palliative Care Specialist Do?) or goals of care conversation (read Post 8: I Want the Best Possible Care for ME - Part 2 of 2) could have changed the direction of this man's life. Even if the actual medical care had not changed during that particular hospitalization, taking the time to facilitate a meaningful conversation between a father and a son (read Post 3: The Secret Sauce in Palliative Care...) could have resulted in their verbalizing out loud what the medical team could not hear, so focused they were on villainizing the son.
"Don't go, Dad. I love you."
"I love you, too, son. I will do what I can to relieve your suffering."
It took me some time to realize that when I am treating a patient for their serious illness, I am treating a person with a family who unfortunately are also living with the serious illness. They are all impacted together. And as with all major decisions in life, people often make decisions for the good of the family.
"I am going to prioritize being home more often with my daughters and not accept that promotion at work, which would mean more travel time away from my family."
"I am going to prioritize staying home to care for Grandma and defer starting college for a year."
As a healthcare provider and outsider, it is sometimes hard to witness when a family's love appears more burdensome than supportive. "Don't leave me. If you loved me, you would keep fighting. You would keep trying." (Read Post 46: How Being a "Fighter" Can Alter Your Path and Post 61: The "Supportive Family" - Two Perspectives on Support.)
A person with serious illness or advanced disease already has so much to cope with - loss of identity, loss of purpose, loss of relationships - and it is hard to see them struggle to take on also the burden of easing their family's fears and grief.
I have learned that though healthcare providers may become frustrated with a person's major medical decisions, we have to accept and support a person's choice to place their family's needs over their own. Sometimes a person sees their family suffering, and they try their best to relieve their family's suffering. After all, a patient with a serious illness is not just a patient. They are also a mom, a dad, a husband, a wife, a grandfather, a grandmother, a son, a daughter. They want to take care of their family.
Honestly, I think the best way to address seemingly conflicting wants is for everyone to speak from the heart, whether or not the conversation is facilitated by a third party. As a palliative care specialist, I primarily verbalize out loud questions that are already sitting there in the room and act as a silent witness as patients and their families hesitantly - and usually with relief - express what is most important to each other.
A 45 year old single mom who had undergone surgery, chemotherapy, radiation, and more for breast cancer spread to the brain, bone, and elsewhere carefully said, looking at the wall instead of at her 21 year old full time caregiving son sitting next to her, "I am dying. My body has changed so much in the past year, and it isn't working right. I know I get confused sometimes, but I can still think for myself. I know we never talk about this, but I know something is going on with my body."
Her son paused, staring at the floor. He responded with quiet alarm. "We shouldn't talk about this. If we do, you'll, like, give up."
"Accepting the inevitable isn't giving up."
"If you loved me enough, you wouldn't accept the inevitable. You would fight, and I would fight. Even when I have to carry you to the commode, it doesn't feel like a burden. Taking care of you would never feel like a burden."
"Of course I love you. I will keep fighting to be with you if I have the choice. If it's not meant to be - and I think my body is telling me that I'm dying - then I don't want to hold you back. I don't want you to keep your life on pause to take care of me. You need to go on and be with your friends and meet someone and get a job. I love you, and I want to stay with you. I also want you to have your own life."
There was nothing I could have said as a healthcare provider that would have eased my patient's or family member's grief and sadness as much as this mother's words to her son and this son's words to his mother.
"Mom, we're NOT giving up." Then he sighed and added, "Ok, Mom. Let's go ahead and get that hospice education visit (read Post 2: Five Major Ways Palliative Care Differs from Hospice). We're not making any decisions. It's just to see what they have to say."