“The art of living well and the art of dying well are one.”~
We do not do a good job of talking about dying. We believe that death is something that happens to others; that if and when it happens to us, we will be the fortunate ones who go to sleep healthy and breathe our last (at age 110) without any pain. In the US in particular, we are fooled by TV shows with physicians who are always saving lives, patients who are pulled back from the brink with no scars; House (TV Doc) diagnoses impossible disorders and clears them up with a simple IV treatment in an hour. It is no wonder then that we are unprepared for the distressing messiness of what end of life care can look like.
This week I got hit with three messages on the same subject within a few hours of each other. I read a blog concerning the prevalence of futile care in the US. It is an unfortunate fact that the most health care dollars are spent on end of life care, usually in an Intensive Care Unit surrounded by tubes and lines and needles, rather than loved ones and music and candles. And at the end of these expensive and invasive interventions comes the inevitable. Yes, there are times when acute and aggressive treatments are called for, and the miracles of modern technology coupled with skilled healthcare providers can save lives. But when the treatments can only delay or even accelerate the inevitable, would you rather be told the truth? That you are sacrificing quality for quantity.
My next message came from a woman in distress. I had asked her a simple question “how are you doing” as she looked sad. It turned out that her mother had died recently and unexpectedly. From being relatively healthy, in her late 70’s, she had ended up in an ICU, with a tube down her throat, and suffered for 25 days before she died. The daughter told me she felt guilty, if she had known she would not have let it go on so long; she should not have agreed to the aggressive actions; she knew her mother had no quality of life in those last days. Often we make decisions based on incomplete information, or with the best of intentions, and it is only in hindsight that we can see there were better choices. I could only listen to her and encourage her to forgive herself, for she had done the best she could at the time.
My last message came from a student (recently embarked upon the nursing program), who was very uncomfortable with the thought of a niece signing ‘do not resuscitate’ papers on her elderly aunt. We had a conversation about the quality of life for people with dementia, and it appeared she believes (as many do), that part of letting God take you when He is ready is never signing ‘do not resuscitate’ paperwork. And I wondered how many people share that opinion. How many people believe that no matter what the outlook, no matter what the quality of life of the person suffering, it is against God’s will to withhold treatment? There is also a Christian principle that suggests that it is necessary to suffer in order to become more holy.
Those of us who have worked with people at the end of life in a hospital setting know that the end is not pretty, and for the one on the receiving end, the cost of aggressive and expensive care can be added suffering and pain. This is certainly not what we saw when we were growing up. I am sure that most of our grandparents died at home, surrounded by family, peacefully slipping away without drama. And most of us, if asked, would want the same for ourselves (on that day far in the future when it is our time!).
This week we have had to confront death, sudden, tragic death as an airplane dropped out of the sky. Those who died in that crash had no time to plan for their end. Their families have to deal with their shocking disappearance, have to try to face the unimaginable. But most of us will not die in this way, and I hope that by raising this subject I will make you think about your choices, think about what your loved ones want at the end of life. And I hope it stimulates some conversations about the beliefs that we have about invasive and aggressive care at the end of life. Most of the nurses you know will happily tell you of their experiences. It is nothing like any of the magical moments we see on TV.
So if you find yourself in a situation where you are trying to make a decision for a loved one (or for yourself), make sure you have the complete information. Will invasive treatment result in improved quality of life? Will short term discomfort lead to the possibility of remission of the situation? What is the true outlook? Some physicians are good at communicating these things, others are less open. But there is another truth, that healing can take place even when there is no hope for a cure. And it can only take place where there is the opportunity for honesty and true human connections.
As we journey together on this planet, let us try to give each other a helping hand. Have a fabulous Friday family, and make the most of every wonderful breath that you take! Apologies for skipping last week, my schedule got the better of me!