Nobody wants a protracted, dehumanised death: why is it still so easy for doctors to ignore a dying patient's wishes?
Antibiotics, defibrillators, feeding tubes and ventilators are lifesaving tools that sometimes become weapons to prolong life against our will. None of us can escape death but some of us want to shape our final time on earth. We don’t want to live for years in a nursing home rendered unconscious by late-stage dementia; or brain-damaged by strokes; or on and off ventilators with recurring pneumonia, growing so frail we lose the choice of an unfettered death at home. We grow determined in our wishes. We formalise end-of-life plans asking for comfort care only, no heroic, invasive or futile medical procedures, no artificial food or hydration, minimal feeding. We assemble and legalise these plans. We calm our fears.
It sounds rational and safe. But in reality, the faith we place in legalised directives, or in the medical professionals charged with enforcing them, has proven unwise. Medical professionals ignore such directives, no matter how carefully we’ve crafted them, particularly if we end up in a hospital or nursing facility.
I’m not talking about assisted suicide. I’m talking about plans that specify withholding treatment, such as a ventilator, a feeding tube or antibiotics for pneumonia, for a person who won’t recover, prolonging death even over fierce objections from family members. This situation results, in part, because directives go against the culture of medicine, which focuses on healing, on doing everything possible even if what’s possible proves futile. Our wishes might be viewed as disrespecting life, and medical personnel can prevent us from dying, no matter how airtight our legalised directives are.
The terms ‘advance directive’ and ‘living will’ are used interchangeably, but they’re actually not the same, even though the intent of each is to prevent futile medical treatment. Advance directive is the generalised term for the legal documents spelling out our end-of-life wishes, should we become unable to express them at the time. There are three types of advance directives: living wills, healthcare power of attorney, and healthcare proxy. Living wills detail the type of medical treatment people might not want, such as artificial nutrition, antibiotics, dialysis, resuscitation, and so on. Both healthcare proxies and powers of attorney appoint another person to make medical decisions on our behalf. (...)
In 2007, the US physician Henry Perkins wrote in the Annals of Internal Medicine that there are too many problems with advance directives for them to be useful, even when the directive is legally valid and precise. Perkins used this example. An elderly patient has frequent bouts of pneumonia that put him in hospital on ventilators, where his primary care physician suggests a formalised end-of-life plan. With their physician, the patient and his wife craft a directive that spells out treatments he would and would not want, including resuscitation or mechanical ventilation. The family’s doctor also has the foresight to ask who would likely be present in a medical crisis, and the couple mention their daughter, who would be apprised of her father’s wishes and given a copy of the directive.
Perkins’s example then illustrates how quickly an advance directive can unravel. Back home, the patient starts to have trouble breathing, his wife calls 911. An ambulance takes him to hospital. He has pneumonia again and is unresponsive. Their physician is out of town, but his wife has brought a copy of the directive and gives it to the hospital staff. Together they decide against antibiotics and choose to give only care that would make her husband comfortable. This is how advance directives can and should work.
But then the patient’s daughter arrives at the hospital, learns that her father is receiving comfort care only, and accuses her mother and the hospital staff of ‘murdering Daddy’, threatening lawsuits and to notify the press unless her father gets antibiotics and other forms of life support immediately. The daughter bullies her mother and the medical staff, and the patient receives antibiotics and life support. He dies anyway but Perkins emphasises that it’s a death the patient never wanted, and one he took time and care to avoid.
This could happen so easily in my family. Faced with the same scenario, I too would choose against antibiotics but in my heart I know that one of my sisters could well be the daughter in Perkins’s example, even though my sisters sat in the attorney’s office when my mother named me as her healthcare proxy and neither of them objected. I could be faced with honouring my mother and destroying my relationship with my sister, who might find she cannot let my mother go.
by Jeanne Erdmann, Aeon | Read more:
Image: Cory Hendrickson/Gallery Stock
Antibiotics, defibrillators, feeding tubes and ventilators are lifesaving tools that sometimes become weapons to prolong life against our will. None of us can escape death but some of us want to shape our final time on earth. We don’t want to live for years in a nursing home rendered unconscious by late-stage dementia; or brain-damaged by strokes; or on and off ventilators with recurring pneumonia, growing so frail we lose the choice of an unfettered death at home. We grow determined in our wishes. We formalise end-of-life plans asking for comfort care only, no heroic, invasive or futile medical procedures, no artificial food or hydration, minimal feeding. We assemble and legalise these plans. We calm our fears.It sounds rational and safe. But in reality, the faith we place in legalised directives, or in the medical professionals charged with enforcing them, has proven unwise. Medical professionals ignore such directives, no matter how carefully we’ve crafted them, particularly if we end up in a hospital or nursing facility.
I’m not talking about assisted suicide. I’m talking about plans that specify withholding treatment, such as a ventilator, a feeding tube or antibiotics for pneumonia, for a person who won’t recover, prolonging death even over fierce objections from family members. This situation results, in part, because directives go against the culture of medicine, which focuses on healing, on doing everything possible even if what’s possible proves futile. Our wishes might be viewed as disrespecting life, and medical personnel can prevent us from dying, no matter how airtight our legalised directives are.
The terms ‘advance directive’ and ‘living will’ are used interchangeably, but they’re actually not the same, even though the intent of each is to prevent futile medical treatment. Advance directive is the generalised term for the legal documents spelling out our end-of-life wishes, should we become unable to express them at the time. There are three types of advance directives: living wills, healthcare power of attorney, and healthcare proxy. Living wills detail the type of medical treatment people might not want, such as artificial nutrition, antibiotics, dialysis, resuscitation, and so on. Both healthcare proxies and powers of attorney appoint another person to make medical decisions on our behalf. (...)
In 2007, the US physician Henry Perkins wrote in the Annals of Internal Medicine that there are too many problems with advance directives for them to be useful, even when the directive is legally valid and precise. Perkins used this example. An elderly patient has frequent bouts of pneumonia that put him in hospital on ventilators, where his primary care physician suggests a formalised end-of-life plan. With their physician, the patient and his wife craft a directive that spells out treatments he would and would not want, including resuscitation or mechanical ventilation. The family’s doctor also has the foresight to ask who would likely be present in a medical crisis, and the couple mention their daughter, who would be apprised of her father’s wishes and given a copy of the directive.
Perkins’s example then illustrates how quickly an advance directive can unravel. Back home, the patient starts to have trouble breathing, his wife calls 911. An ambulance takes him to hospital. He has pneumonia again and is unresponsive. Their physician is out of town, but his wife has brought a copy of the directive and gives it to the hospital staff. Together they decide against antibiotics and choose to give only care that would make her husband comfortable. This is how advance directives can and should work.
But then the patient’s daughter arrives at the hospital, learns that her father is receiving comfort care only, and accuses her mother and the hospital staff of ‘murdering Daddy’, threatening lawsuits and to notify the press unless her father gets antibiotics and other forms of life support immediately. The daughter bullies her mother and the medical staff, and the patient receives antibiotics and life support. He dies anyway but Perkins emphasises that it’s a death the patient never wanted, and one he took time and care to avoid.
This could happen so easily in my family. Faced with the same scenario, I too would choose against antibiotics but in my heart I know that one of my sisters could well be the daughter in Perkins’s example, even though my sisters sat in the attorney’s office when my mother named me as her healthcare proxy and neither of them objected. I could be faced with honouring my mother and destroying my relationship with my sister, who might find she cannot let my mother go.
by Jeanne Erdmann, Aeon | Read more:
Image: Cory Hendrickson/Gallery Stock
