Life SustaiNing Procedures
Decision Points
Who doesn’t wish for a TV death: the one where you have reached a healthy old age and are asleep in your bed at home, after a lovely meal shared with friends and family, and in the morning you are gone? In the words of surgeon Sherwin Nuland in his book, How We Die: Reflections on Life’s Final Chapter, “I have seen too much of death to ignore the overwhelming odds that it will not occur as I wish it. Like most people, I will probably suffer with the physical and emotional distress that accompanies mortal illness and like most people I will probably compound the pained uncertainty of my last months by the further agony of indecision – to continue or to give in, to be treated aggressively or to be comforted, to struggle for the possibility of more time or to call it a day and a life – these are the two sides of the mirror into which we look when afflicted by those illnesses that have to power to kill.”
DNR Status
Much of the debate and discussion on treatment planning occurs around the issues of DNR (Do Not Resuscitate.) Some providers now refer to this as DNAR (Do Not Attempt to Resuscitate), while others are opting for a new acronym, AND (Allow Natural Death). Regardless of which abbreviation you use, the confusion over this decisions, in large measure, results from a belief that suddenly, instead of a culture that strives to give, we withhold at a time of crisis. The cognitive dissonance that occurs when withholding anything, especially from someone you love is difficult; even when it may be the best course of action. As a result, patients may be subjected to treatment and procedures they would otherwise have refused.
CPR is not whether you live or not; it’s how you want to die
Cardio Pulmonary Resuscitation (CPR) Statistics:
- TV: 2/3 of the patients who receive CPR are discharged in good health before the show is over
- Real Life: 15% survival rate
- If CPR is performed in the hospital the survival rate increases to 20%
- More than 90% of patients who receive CPR suffer broken ribs
- More than 50% have brain damage
The actual survival statistics on CPR are clearly very different than what we often believe from our TV imagination. Without a DNR in the chart, CPR will be done irrespective of one’s health status as the default action without a DNR order is a full code. One oncologist, turned palliative care physician, explains cardiopulmonary resuscitation (CPR), which is at the crux of the DNR discussion, “is not whether you live or not; it’s how you want to die.”
The genesis of CPR was to treat people who had an unexpected cardiac arrest in the operating room. CPR was never designed for the frail elderly who, in today’s world, are its unwitting recipients and who almost never survive intact. For many family members, a DNR order has been construed as meaning withholding all types of medical care and a refusal to treat the patient, which is an intolerable position for most of us. What is less clear in the discussion is that even in cases where there is a DNR in place, treatment short of resuscitation will be performed unless the patient has indicated otherwise. Medical change agent Dr. Atul Gawande leaves us no room for doubt indicating that, “Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology and strangers.” Oftentimes, this result is not one we would wish for ourselves or those we love.
Life Sustaining Technologies: ventilators, Dialysis, Feeding Tubes, Pacemakers
In addition to CPR, there are other important decision points that take careful planning and forethought before the emergency strikes. The most common medical decisions involve ventilators, dialysis, feeding tubes and pacemakers. With the exception of a ventilator, most can be begun simply, but these technologies can take on a life of their own, even as the patient’s life is waning.
ventilators
At times the human body is unable to breathe on its own. In these instances mechanical assistance comes into play. At the least invasive end of the continuum is an oxygen mask that offers relief from shortness of breath by providing a steady flow of oxygen to the system. In cases where patients are unable to breathe on their own, the patient may be intubated by having a tube put down their throat and attached to a machine that breathes for them forcing air into their lungs. This routinely happen in surgery as our systems are slowed by anesthesia. In cases where patients are unable to breath on their own for a prolonged period of time, a tracheostomy is performed and the ventilator permanently attached. A conundrum arises when the need for assisted ventilation occurs in the face of multiple system shut down. On its own, a ventilator can continue breathing long after the brain has ceased to function. This is often the meaning of being alive attached to a machine and is a difficult decision for many to face. Once a ventilator is utilized, the decision to "unplug" the machine is often wrought with anxiety, intertwined with sadness and even guilt and uncertainty. Discussing this eventuality before the emergency is the best way to mitigate many of the issues raised in the process of the decision whether or not be used a ventilator.
Dialysis
Our kidneys clean our blood and when they are no longer functioning dialysis machines can provide this life sustaining process. Except in “clear” cases of temporary illness or injury, the discussion of when to stop dialysis may well be before beginning it, as in the case of some people where chronic heart failure is a terminal condition. As people begin to approach the ends of their lives, there may come a time to stop using it.
Feeding Tubes
Decision making also surrounds the choice of when and whether to utilize passive feeding technologies. While there are many acute instances where passive feeding is part of the treatment plan, this is not always the case in end of life situations. Intravenous feeding is a temporary fix that can continue for a mere couple of weeks and feeding via a nasogastric tube is good for only a couple weeks more. The placement of a port for parental feeding comes with its own complications and there is no clear or logical denouement. With a feeding tube in place our swallowing reflex is left unused and becomes weaker. When this happens, food is often unable to be reintroduced in the quantity of calories that is necessary to sustain life due to choking, which increases the danger of aspiration and pneumonia and requires the feeding tube to become a life-supporting necessity instead of an interim option.
Pacemaker
Insertion of a pacemaker for many, serves to facilitate a long and fruitful life free from the anxiety of sudden cardiac arrest. As the pacemaker was updated and improved over the years, an automatic defibrillator was added to most of the implanted units. It was an all-in-one procedure and the defibrillator had the advantage of when the heart became too weak to send a signal to the pacemaker, the defibrillator would act to jump start the heart, which would then continue to beat until the next episode. Unwittingly, the defibrillator adjunct has resulted in additional end of life turmoil. In the process of dying, a pacemaker on its own may not keep someone alive, as the heart response gets too weak to send a signal and allows death to occur; however, the defibrillator needs to be physically shut off. Disarming the defibrillator is simple and painless; it just takes a special magnet passed over the skin, but the decision is often fraught with anxiety and emotion. The bump on the chest, a constant reminder of the life saving device implanted there, is rendered useless and becomes an observable life line severed.
Journalist Jane Brody in her book, The Guide to the Great Beyond: A Practical Primer for Preparing for the End of Life, provides additional clarity and echos the importance of decision-making about treatment options and offers specific issues to discuss with your proxy:
Would you want your doctor to withhold or withdraw treatment, if that treatment will only prolong dying?
Would you want CPR?
Would you want to be on a respirator?
Would you want tube or IV feeding and water?
Would you want maximum pain relief if it hastens your death?
Would you want to donate your organs?
Additional Resources:
Books
Extreme Measures, Finding a Better Path to the End of Life by Jessica Nutik Zitter, MD
The Guide to the Great Beyond: A Practical Primer for Preparing for the End of Life by Jane Brody
How We Die: Reflections on Life’s Final Chapter by Sherwin Nuland
Websites
National Institute on Aging – Understanding Health Care Decisions at End of Life
Compassion and Support at End of Life – Life Sustaining Treatments
Renal and Urology News – Dialysis at End of Life