Putting the “Care” Back in End-of-Life Healthcare

There was a recent segment on the PBS news that featured the daughter of my good friend and former Church Health Center board chair, Dr. Kenneth Robinson. His daughter, Dr. Maisha Robinson, is a physician at UCLA who is working with African-American clergy in Los Angeles to encourage their congregations to embrace the idea of palliative care at the end of life.

It is startling that only 8% of all African-Americans have a living will or are even open to discuss a plan that centers around how they will die. This compares to 45% of Caucasians. It is startling, but it’s also problematic.

The problem stems from our country’s poor track record of providing quality medical care to African-Americans. Historically, blacks were not offered the best medical care possible. The residual of “experiments” like the Tuskegee Syphilis Study is still prominent in many minds. The consequence is that many African-Americans want the doctor to “do all they can” to prolong life, no matter the consequences.

This desire for the “best” medical care, unfortunately, means that we are prolonging the dying process for many African-Americans and, ironically, not offering a nurturing experience in a patient’s last days. In fact, we’re doing just the opposite. By dying in a hospital, perhaps tethered to a ventilator, patients are kept from being nurtured by the people who love them most. Rather than receive care that eases suffering, patients often continue down a long road of treatments in a fruitless quest to provide a cure to a disease that has dictated that the end is inevitable. The result is that everyone can say “we did all we could.”

In my mind, this declaration is an illusion. There was never anything we could do to save the person’s life and provide true quality of life. We kept the person’s heart beating, but the essence of the person who was loved had long since died.

Putting the Care Back in End-of-Life Healthcare

The younger Dr. Robinson is working with pastors in LA to get them to preach that death is not the enemy, that offering comfort care at the need of life is a better way to help people die.

I have learned over the years that the easiest thing for the doctor to do is do “more.”

There is always one more thing that we can try.

There’s always one more drug we can add.

We can always call one more consultant.

But what is never asked is this: To what end? A person who is 85 years old with metastatic cancer is unlikely to live much longer no matter what the situation. Do we really want Grandmother to die around people she doesn’t know, in a place where they never turn the lights off, surrounded by people who do not know her well enough to love her?

I am proud of Maisha for taking on this daunting task. Unfortunately, as a white male doctor, it is hard for me to effectively champion this cause and have people listen. It is people who look like me who made Maisha’s work necessary. But I do believe that people of faith can play a large role in helping her work and others like her succeed. While I am certain that it is not possible to die with dignity – death takes away your dignity – I believe that we can die well. It is the role of the Church to help people die in a way where God’s will that we have lived with joy can be fully realized.

 

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4 thoughts on “Putting the “Care” Back in End-of-Life Healthcare

  1. Thank you for continuing the discussion in your blog. The quality of life at the end of life is a problem for all families, but I didn’t realize the disproportionate degree these decisions impact black families. Good work by the young Dr. Robinson in LA.

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