Life and death decisions behind closed doors
June 9, 2017 - Right to Life of Michigan Public Affairs Associate Genevieve Marnon frequently works with end-of-life situations. She intimately knows the issues of euthanasia, doctor-prescribed suicide, and passive euthanasia. She and our Lansing office deals with many calls from people facing end-of-life care conflicts.
In September Genevieve’s father, Bob Tank, went to the emergency room complaining of shoulder pain. Bob suffered from severe emphysema and his family knew he likely only had a few months or years to live. His acute pain, however, was a dangerous pulmonary embolism requiring an immediate fight to stay alive.
The fight was not medical skill pitted against disease, but a 13-day fight for his life against medical opinion. Genevieve was no longer helping strangers but fighting to save her own father’s life.
“I almost expected it, because I’ve heard so many of these stories,” she said.
Bob’s experience in the emergency room was common to anyone who has faced a life-threatening blood clot. The emergency room staff focused on stabilizing Bob and succeeded in their mission. He was then transferred to the intensive care unit, where he would recover as they worked to dissolve the clot in his lungs.
Genevieve said her father was only 76 years old and in decent health given his chronic condition. He was enjoying the twilight of his life with his family. He had lived more than year after his previous doctor said he could “go” at any time. Bob had not left yet, and Genevieve said her father was not quite ready to go.
Instead of being allowed to heal—to spend his remaining days at home with family—the very coherent and aware Bob became the nearly helpless subject of efforts to hasten his death. The wishes of the hospital quickly diverged from those of the patient.
“It wasn’t until they learned of his end-stage emphysema that they changed,” Genevieve said.
Genevieve said sometime in the night after his admission Bob suffered what the hospital vaguely told them was an “episode.” Things quickly began to go wrong from there.
Bob’s family noticed he was exhibiting signs of dehydration. They noticed his IV line was hooked up, but not actually providing him with fluids. When questioned about this, the doctor matter-of-factly told Genevieve giving Bob fluids would “only prolong the inevitable.”
Genevieve said the hospital thought dehydrating Bob without telling him was an acceptable way to hasten his death. Patient consent and autonomy is supposed to be a bedrock of medical ethics. Hydration is simple, standard, humane medical care and should never be denied to a patient unless it would harm the patient.
“Doctors and medical professionals are making choices about hastening deaths to save resources,” Genevieve said.
Staff repeatedly approached the family about putting a do not resuscitate (DNR) order in Bob’s file. Genevieve said her family and her mother, Lenore, emphatically refused. Bob was obviously conscious and continuing to express his desire to receive medical treatment.
“Why are you asking my mom? Go ask my dad,” Genevieve said she frankly told the doctor.
To Bob’s family, it appeared the hospital staff was trying to break down the family’s unity to get them to override Bob’s expressed wishes. Genevieve said they would take some family members aside, probing to see which one could be persuaded to allow Bob’s passive euthanasia.
“I didn’t expect the militant style of the doctor and nurses badgering us about removing treatment,” she said.
They bullied Bob as well, encouraging him to give up and go into hospice care. Bob and his family knew he wasn’t going to be alive five years from now, but his wish was to receive common treatment to try to recover enough to go home for his final time with his family.
“Bob didn’t want to die, and he made it clear he didn’t want to die,” Genevieve said.
Overt suggestions and demands to override Bob’s wishes didn’t succeed, so the hospital began covert attempts. At one point, Genevieve asked to see her dad’s medical file. The nurse agreed after asking Bob for his consent, since he was obviously conscious. A DNR order had been slipped into Bob’s file without his knowledge. Genevieve said her father’s eyes became as wide as dinner plates when he heard they planned to secretly let him die.
Stop for a moment.
Imagine yourself in this story, discovering a secret order in your medical file contradicting your expressed wish. As you lay in your bed fighting to live, you learn those responsible for your care want you to die. You’re trapped. A society soaked in messages about personal choice suddenly no longer has any use for you or your choice to live. A medical community that is abandoning the Hippocratic Oath sees your continued existence as unworthy of their efforts, instead of the object of their mission.
The DNR order was removed, but with lackluster commitment and several other questionable actions from medical staff Bob’s fate was sealed. The final injustice came in the form of a doctor threatening to take the family to court the following morning unless Bob was moved to hospice that night. Faced with the prospect of their dear loved one dying alone—his own family forbidden to see him—the family relented. The hospital took away Bob’s bi-pap machine that was helping him breathe. A few hours later, in the morning of September 27, 2016, Bob was dead.
The Tank family did everything right. Bob was conscious and expressing his will to live. He had a durable power of attorney for health care backing him up in case he was unable to express his wishes. The family had all agreed with him and was totally behind their husband and father. They were playing an active role in monitoring his care. None of it mattered.
Genevieve’s story is not unique. Right to Life of Michigan offices have always received calls regarding end-of-life medical conflicts, but lately some stories have become greatly disturbing. Two bills would address these situations in Michigan.
The first bill, Simon’s Law, is inspired by a story and legislation out of Kansas. It would stop the heinous practice of secret DNR orders that override the wishes of patients or their parents.
The second bill would deal with situations even more Kafkaesque than Bob’s. The hospital at least told the Tank family face-to-face they were going to go to court to appoint a guardian to override Bob’s wishes. Several stories brought to Right to Life of Michigan lately include cases where doctors and hospitals have gone to court in secret. Families show up at the hospital to learn the hospital is suddenly now in charge of their loved one by court order.
Two fundamental bedrocks of our rights as Americans are due process of law and the presumption of innocence. These secret Star Chamber travesties resulting in dead patients savages the concept of due process of law and the right of people to be represented. The principle of a presumption of innocence is twisted, leaving a family member or patient advocate to argue the patient should be allowed to live. The second bill would prevent secret courts from overriding patient’s wishes and restore a basic presumption that it is a patient’s best interest to be alive.
Genevieve is quick to point out there are real situations where patient advocates can’t let go and are no longer making decisions in the best interest of the patient. Those real legal disputes must be approached fairly in court in the light of day, however, not in secret and in service to medical cost-cutting.
Though the fight to save Bob‘s life was ultimately unsuccessful, Genevieve said fighting for her father was worth it.
“In my opinion my dad needed every moment of the 13 days to make peace with God,” Genevieve said.
Bob’s case is real, but extreme cases like his will hopefully soon be impossible. Many conflicts over medical care or end-of-life decisions will still exist, but most of those can be resolved with some simple planning in advance.
“Check your records. Designate a patient advocate. Have a family meeting,” Genevieve advised.
For more information about end-of-life decisions and durable power of attorney for health care in Michigan, click here.