Dr Pamela Prince Pyle

When We Don’t Agree on End-of-Life Care

Her Body Says Go…

She Says I don’t know.

Dying is complex. There are many contributing factors to this complexity. Patient factors, disease factors, relational factors between family, friends, clergy, clinicians, preconceived notions of what the dying process will be, fears, repressed memories, finances, and I could go on, and on. 

She tears up at the mention of her mother. A smile attempted to counter-balance the sadness she still feels. I notice she rubs her hands, hunching her shoulders forward. In this moment, she looks like a young girl. 

We journey together for a reason. God’s love and care have brought us together. Is it for her, or for me, or more likely, both of us? That is God’s economy.

Through our months of working together, I learn more about her mother’s death from cancer. Sometimes, it feels raw, fresh, as if a band-aid just ripped a scab from tender tissue that is not done healing. Other times, it appears as a faded scar. Her grief will never go away and yet, it fades like the scar. It becomes a visual reminder of the battle their family went through.

Today, we discussed how very difficult it was near the end. The evidence was clear. Her mother’s imminent death was perched upon her thin body. Her sallow skin appeared translucent without the bodies protective layer of fat. Chemotherapy and terminal illness had taken its toll on her once vibrant mother. She didn’t know which had caused this final decline. 

She and her siblings did know that the chemotherapy was no longer working. What once was hope, now only brought dread. They felt she should stop. 

Can you imagine the internal conflict they must have felt to have come to this conclusion? Of course, they didn’t want to lose their mother, and yet, they must have already felt grief as if it had occurred. That grief was then carried with the unforgettable burden of seeing their mother suffering. This was a fate worse than death.

Yet, their mother chose the path of continuing the treatments and their father in his grief couldn’t envision a clear path forward. And so it was. A mother fights for what was not to be, and a family looks for someone, anyone, to guide them in this complex dying journey. 

They felt alone despite being surrounded by many. In the end, a choice for hospice care was made and she died the next day. 

Hospice Killed Her

This family didn’t believe that hospice killed their beloved mother. However, I have seen time and again where hospice was called too late, and the timing coincided with the tragedy of death. 

Hurting family members blindly blame an institution designed to bring comfort for the death of a loved one. It becomes embedded in their complex grief. It is a deep and pervasive pain unsubstantiated by truth. 

The truth is that with this family and others they look to their clinicians to guide them in their time of greatest need. Conversations should be had that reflect reality. In my practice, I always made recommendations based upon what I would choose for my spouse, my mother…my child. It is not always true for others. 

So, what should you do if you find yourself in the circumstance I described?

Understanding Love

Dying patients face extraordinary emotional challenges as they navigate their own feelings and those of the ones they love. They may feel fear, regret, grief, or responsibility.

In my series on Facing your Fears in Death and Dying, I discuss many of the fears which may drive one to attempt another day at any cost. Regret is often centered on what cannot be changed in the final months. Perseveration of these regrets leads to the longing of a way to reverse them with just a little more time. Grieving one’s own death is natural and all that will be missed haunts the days and nights. Holding on to the fragile life they have is preferred to the loss they can expect. 

Yet, in my experience, it is a sense of responsibility that keeps patients fighting beyond the inevitable. Patients know when death is inevitable. They sense the night approaching. 

While fear, regret, and grief are internally focused, responsibility is outward focused. In the end it is love that stokes the fires of struggle. It is love in a wife’s heart that cannot bear the thought of her husband having the tiny piece of food in the corner of his mouth which will remain there without her gentle touch. It is love in a mother’s heart which longs to comfort the crying grandchild that her exhausted daughter just put down to sleep. It is love in a sister’s heart that makes her believe she can help her brother quit…for good. She cannot imagine those around her, without her. Therefore, she struggles…because she loves. 

In the end, the patients must determine how their final days will look. Yet, that final day is set by the one who created them, before they ever came to be. 

“Your eyes saw my unformed body;

all the days ordained for me were written in your book

before one of them came to be.”

Psalm 139:16

2 Responses

  1. I’m in hospice currently. My hospice workers are very compassionate and listen to my concerns. When I found out that the end of my life was near I knew that I needed someone along with God to guide me through this journey. God will continue to bring me peace and comfort throughout the remainder of my days.

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