"We Want Everything Done for Mama!"

The folly of futility

I believe in the sanctity of life. I believe in the incredible worth of human beings from first conception to last breath.

But I believe that sometimes we need to be realistic.

Many times I see poor, frail senior citizens who have sudden medical events that bring them to the emergency room. Often they have already been suffering the consequences previous strokes, heart attacks, broken bones, kidney disease or any of the many things that afflict us as we move through this life and our bodies wear inevitably down.

Frequently they have dementia that leaves them confused every single day; uncertain where they are, who they are or even who those people are around them. Their minds still dwelling in past times, better times, as they imagine loved ones nearby who have already left this ‘mortal coil.’

Some of them are contracted and weak, consigned to beds or recliners, their feet and hands padded to avoid the pressure sores that come from immobility.

Their lives are hard and yet, sometimes they can’t even comprehend why they hurt, why they struggle.

Into these situations come sudden changes, dangerous conditions, that threaten their very lives. A fall from a wheelchair may result in a brain hemorrhage. Longstanding heart disease may cause a dangerous heart attack, as cardiac muscle dies and their blood pressures drop dangerously low. Infection may arise, and leave them in need of extensive surgery due to infections in their abdominal cavity; surgery hard for the young and healthy to endure, much less the aged and weak.

I have conversations with their families. Some are at peace with doing less, with allowing the disease to progress to its inevitable and fatal end. They have already addressed this when their mothers or fathers had clarity and could say ‘I don’t want much done.’

All too many say, with tears, ‘We want everything done for mama!’ (Or papa, uncle, or aunt, etc.) I try to explain that at 95, their relative won’t endure brain surgery well…if a surgeon is even willing to try. I gently point out that the suffering of an abdominal surgery may not be worth the low likelihood of success, or that sometimes, an arrhythmia from a heart attack might just be the most peaceful way to die.

These discussions too frequently fall on deaf ears and we do as much of ‘everything’ as we can for men and women who are unlikely to have any benefit in reduced suffering or increased length of years.

My father died in September. He had been very ill but his sudden respiratory arrest was unexpected. I had no delusions about his underlying health. He was not well and the last time I saw him, something in my doctor brain said ‘not long now.’ I hoped I was wrong but I wasn’t. His event didn’t last long. He died relatively quickly. But if he had faced a lingering misery, I would have said ‘stop, enough.’

In part this is because I know that I will see him again. I know that my father will great me in the Kingdom of God. I have that peace.

But in part, this is because I understand the finality of our physical lives and the futility of pretending that we are not mortal. And I understand that sometimes, a disease can be a gift; especially when one is bound to the bed, confused, broken by life, unable to enjoy even the simplicity of food, (or hearing or vision) and tormented by IVs, bladder catheters, scalpels, tubes, bright lights and monitors. All the more when the same person cannot comprehend what is happening.

I once saw a patient who had pneumonia and was sent from her nursing home. She had been struggling with it for weeks and was declining despite antibiotics. Already suffering from dementia, her family made the decision that they did not want further treatment. They wanted comfort care. And yet, a nurse in her nursing home sent her to me in the ER.

I called and said, ‘you now that her family has power of attorney and didn’t want this right?’

‘Yes Dr. Leap, but I just don’t think anyone should die of pneumonia.’

‘Well, what should they die of, I asked?’

‘Why, natural causes of course!’

Mind you, we stave off ‘natural causes’ all the time. But there is a time to stop. A time to want less, expect less and do less.

This does not mean that the frail, or the demented don’t have quality of life. In fact, I firmly believe that we have no idea what quality of life even the most broken body and mind have. It may be that angels sing to the sick and demented; it may be that they are transported by forces unseen to joys we cannot possibly grasp.

But that does not mean we should continue to do things that don’t help and arguably make them suffer more.

I understand wanting to do everything. But maybe, ‘everything’ needs to include the kindest, gentlest and most honest thing possible.

Doing everything the right way sometimes means saying goodbye. Even more so when doing less in this life might just open the door to wonders our loved ones are longing daily to enjoy once they are free.

Wonders from which they are only one medical event and one last breath distant.