Frank had lived a varied and sometimes difficult life by the time he landed in the hospital with a mild stroke.  Like many middle-aged men, several factors contributed to his poor cardiovascular health, but his prognosis was decent.  However, he experienced a major heart attack soon after arriving, and despite valiant efforts he suffered severe anoxic brain injury before circulation could be restored.  Now lying in the ICU in a persistent vegetative state, decisions needed to be made regarding whether to continue life support via ventilator and feeding tubes.  But by whom?

As elsewhere, Oregon law defines this responsibility.  Frank had no advance directive, which would have specified his wishes.  He had no spouse, either, so the law defaulted to his five biological children.  Frank lived with his eldest, Samantha, who had visited him twice in the hospital, while Karen had been by his bedside for hours each day.  The two women were several years apart, born from different mothers, and the tension between them was palpable.  His other three children were estranged from Frank to varying degrees, but after some effort they were located and engaged.

A “goals of care” conference has been called to seek a decision.  I join several others gathered in person, including Samantha, Karen, and Karen’s sister Abigail, along with Dr. Jonas from palliative care, Frank’s ICU nurse, and others.  Joining by phone are a neurologist and other specialists consulting on Frank’s case, as well as the other two siblings, who do not live locally.

Dr. Jonas convenes the group and reviews Frank’s case, noting his status has not changed in days and there is no basis to believe it will.  The neurologist reviews the EEG data and other tests and offers a concurring assessment.  Frank’s ICU nurse summarizes her bedside observations, and also concurs.

Samantha, the eldest, is armed with internet research.  She grills the team with detailed questions and cites cases in the literature of “miraculous” recoveries from similar injuries.  The doctors acknowledge Frank’s chances of recovery are not absolute zero, but very, very small.  They do not oppose allowing a few more days, but they gently press the family for a timeline to make a decision.  Karen jumps in.

“I can’t believe Dad would ever have wanted to live like this.  You all know him, he’s so strong and proud, he would hate the thought of being helpless like he is in there.”

“He’s been living with me for the past three years,” Samantha retorts.  “Who are you to speak for what he would have wanted?  You’re saying you want to give up on him?”

This argument devolves rapidly, and Dr. Jonas steps in to engage the other siblings.  Abigail quickly sides with Karen, as does Stephanie on the phone.  Frank’s only son refuses to express a viewpoint.

“This is ridiculous,” Samantha explodes.  “You guys haven’t come by to see Dad the whole time he’s been living with me.  You might be willing to give up on him, but I’m not.”  She turns to Dr. Jonas.  “So what happens now?”

Dr. Jonas pauses to restore calm, then proceeds.  “Our goal is to reach a consensus, but it’s not always possible.  If a consensus can’t be reached, the law specifies that the views of the majority prevail.  I know it may not seem fair, but it’s the law.”

Samantha scans the faces of her half-sisters in the room.  She screams, “I can’t believe you all are doing this to Dad,” and bolts from the room in tears.

After a few moments to gather ourselves, the remaining children are polled to affirm their wishes.  Frank is removed from life support later that day and dies shortly thereafter.

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This is not the way anyone wants a life to end.  I wish I could say this case was unusual but it’s not, except for the level of animosity between family members.  I have participated in similar “goals of care” conferences where family members love and trust one another, but still agonize and disagree over this excruciating question:  What would Dad (or whoever) have wanted?

Few requests feel more daunting than deciding the fate of a loved one without their input.  As this story indicates, it places a tremendous burden on caregivers as well.  The advance directive seeks to relieve these burdens by giving a person the opportunity to speak for themselves while they still have capacity to do so.  Unfortunately, many people refuse or procrastinate on completing the form while healthy, and then, like Frank, experience an unexpectedly sudden decline.

Modern medical technology can be remarkably effective at saving a patient’s life, but it often cannot restore or stop the decline of that patient’s quality of life.  Each of us faces an increasing likelihood that we (or a loved one) will need to deal with the questions addressed by an advance directive: 

• Who do I want to make decisions for me if I am not able?  As Frank’s case reveals, the law will decide for you if you don’t decide for yourself.
• What constitutes an acceptable quality of life for me?  Is it important to me to be able to recognize and communicate with loved ones, or simply that I not be in interminable pain?  These are questions Frank’s children could only guess at.
• What interventions am I willing to undergo to sustain my life?  Respirators, IV fluids, feeding tubes, and kidney dialysis can all play a critical role in treating disease and restoring or maintaining quality of life, but they can also sustain a life that many consider not worth living.

Nobody likes preparing a will, either, yet doing so is now common practice.  Why should we be any less diligent about specifying what happens to us while we are still alive than what happens to our stuff when we are dead?  In both cases our loved ones will be impacted by our failure to express our wishes.  In my view, if you have need for a will, then you need an advance directive, too.

Last week I sat with a woman in her 40s with advanced endometrial cancer, along with a beloved niece.  She had just been told she had six months or less to live, and she requested help in completing an advance directive.  Still in shock, she responded numbly to questions about name and address, but perked up as she spoke by phone to her sister and brother, who agreed to serve as health care representatives if she became incapacitated.  She reviewed several crisis scenarios, in each case choosing “I want to be kept comfortable and be allowed to die naturally.”  She grew more expansive as she responded to prompts about what she values in her life, her spiritual beliefs, and her preferred places of care.

At one point she said to me, “I used to think choosing anything other than all possible life-prolonging measures was committing suicide, which as a Catholic I consider a sin.  I now see that it’s not—it’s still leaving God in control.”  She continued, “This was hard, but I’m glad we did it.  I feel good having these things written down.  I’m so relieved that I won’t be burdening my sister and brother with having to make these decisions for me—how awful that would be for them.”  I affirmed that she was giving all of her loved ones a wonderful gift.

If you would like to learn more about advance directives, please click here to view the Oregon form, or search online for an equivalent form for your location.