Uneasy Discussion-Life and Death

Barbara is 94, and she has been in the nursing home for about two years. In those two years, she has been sent out to the hospital a multitude of times, for atrial fibrillation, congestive heart failure, pneumonia and falls. Her condition is poor and her activities of daily living are limited as she is now mostly bed bound. She gets short of breath on minimum possible exertion. Her heart function (LVEF) is 35 % which is not bad, but she has scarred her lungs by smoking in the past. She is on 24/7 oxygen therapy of 3 L/min.

I walk into the room full of kids: three sons and two daughters. The family has seen Barbara go through her ordeal(s). Barbara is not able to make her medical decisions, due to off and on confusion. The family wants every thing done; they want to make sure that their mother gets all the care she can get.

I come across this situation more often than not. I am usually at a loss of words when I see families want everything, even when prognosis is extremely grave. I feel helpless. I try to explain to them in all possible ways, but most have already made up their minds. They think choosing hospice or palliative care is like choosing death or pushing their loved ones towards death.

This helplessness of mine is worse when I see patients in their nineties, with multiple co-morbid conditions, asking me to do every thing for them. I look into their eyes and feel like asking "why"? I know whatever I and my colleagues do, will not instill more life into this body. I know my limitation of prolonging the life and I know that prolonging the life will just mean prolonging the suffering.

We train ourselves for so many things in life from childhood on wards but somehow we fail to train ourselves for death...the most definite thing in life

We train ourselves for so many things in life, from childhood on wards, but somehow we fail to train ourselves for death...the most definite thing in life. We all can disagree on politics and religion, but we all will agree that we are mortal beings. Despite our religious affiliations or lack of them, we as a society have trouble accepting our mortality when it is staring us in our eyes. I wonder why? What makes us think that our time has not yet come? What makes us think that we are OK here, despite our suffering, despite our severe shortness of breath, despite our advanced cancer causing severe pain. We do have to remember that quality of life is defined by the patient and their loved ones and not by the medical staff.

Quality of life is defined by the patient and the family and not by the medical staff

When the patient dies we say that "he is at a better place," but while he is suffering and almost dying, we rarely say "he is going to a better place". Why we don't train ourselves and our loved ones about DEATH? Some patients suffer with multiple health problems, for months, as no one tells to them that "it is OK to move on".

I guess it is not easy, our attachment to the world and our loved ones is too strong for us to think about death. I guess we want to see our grand child get married. I guess we are not religious/a-religious enough. I guess we are not sure where we are heading to. I guess we think we will somehow "squeeze" couple of years from this life. I don't know what goes on in the mind. Perhaps all the above reasons are the the cause of our denial.

Talking about death is not easy. Talking about mortality is the most difficult discussion we have as health care professionals, but it is one of the most satisfying discussion I have.

Talking about death is not easy. Talking about mortality is the most difficult discussion we have as health care professionals, but it is one of the most satisfying discussion I have. Sometimes patients and their families are ready but no other doctor has told them in a "straight forward and to the point" way. Some families are agitated to hear what we say, but there are many who are thankful that we told them that. Some thank you, as it puts things in perspective and makes them plan things better. However, there will always be some who are in denial and will remain in denial, despite our detailed explanation of their disease conditions.

Lets all work on explaining the mortality to patients and their loved ones at the appropriate time in an appropriate way. Lets not beat around the bush when patients want clear cut answers. Again, it is not easy and won't be easy

My book "Tough Decisions In Care of Elderly Loved Ones' will be published in a few weeks.

I wrote this article in January, 2019. Reposted today

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