End of Life Questions -- No Easy Answers

My post-retirement avocation as a senior care-giver (non-medical) has made me an evangelist for advance directives for medical care. Hardly a week passes that I don't hear a story or witness first-hand circumstances which underscore the importance of end-of-life decisions being made well ahead of the time they are needed. This continues to be a topic that most people don't want to discuss or think about, and fortunately most people will not face the problems that advance directives are intended to resolve. But two unmistakable facts are unavoidable. 

• Everyone has an appointment with the angel of death and 
• there is no way to predict with certainty that an advance directive will not be needed.

An advance directive for medical care is a form of insurance. Unlike other types of insurance this one is virtually free of costs -- unless the cost of facing reality is more than one can summon. And like most insurance, it is better to have it and not need it than to need it and not have it. 

There is no way that a layman writing in a blog post can spell out all the reader needs to know about this subject. Besides, doing homework and crafting a list of end-of-life decisions involves personal values that are not and should not be universal. If I have learned nothing else in life it is that beginning and end of life issues are the most contentious any society faces and the only alternative to responsible personal decision-making is tyranny. Aside from any social, religious or family values, coming to terms with end-of-life realities is a matter of good citizenship if nothing else. We owe it to our families and the community to face these questions even as we hope never to need the answers. 

Do not blow off the subject or allow someone else to do so by saying "Oh, I already have a living will" or some other careless remark. It is my observation that advance directive is a living, current document -- not to be confused with a will -- which should be witnessed, understood by as many as possible and updated no less than every five years. Laws are not the same from state to state and even within any community there are  disagreements from one institution to another about the particulars. The Lifecare Advance Directive is a good place to start. 

The most recent Third-Generation advance directive is the Lifecare Advance Directive. In creating this document, researchers reviewed more than 6,500 articles from medical, legal, sociological, and theological sources. The conclusion was that advance directives needed to be based more on "health outcome states" than on rosters of medical treatments and legal jargon. Building upon the insights gleaned from the literature review, an advance directive document created, tested in a study involving nearly 1,000 participants, and then comparison tested against other popular advance directive forms. The results indicated greater patient/proxy decision-making accuracy, and superior comprehensive content as compared with other documents tested. The primary criticism has been that it is very lengthy and tedious to complete. [Wikipedia]

A gerontology class I attended made me a believer. And my last ten years in the senior-care environment has only made me more aware that

• everyone should have an advance directive for medical care, 
• it should identify no less than three agents (in case one cannot be located or may also have died), 
• each of whom has agreed to the responsibility and 
• the document should be readily available and easy to access should the need arise. 
• In many states the agent for medical care cannot be the same person who has power of attorney over other matters. (Avoid conflict of interest. The timing of death has considerations other than medical. 
• Specific instructions regarding as many concerns as possible should be included.

This work is neither pleasant nor agreeable to discuss, especially with the very people who need to know. One woman in the class I attended told of her mother's struggle to pick agents. She didn't trust any of her children to do what she wanted and thought of their family priest. But she didn't want him making decisions that might alienate the family when they would be in need of his pastoral support. So she eventually picked her lawyer!  Dark humor aside, this is a very important issue. 

This post from The Health Care Blog and the comments that follow illustrate end-of-life challenges from a medical and legal perspective. I tried to make it shorter but every detail looked important...

She was 94 years old with advanced Alzheimer’s. She thought it was 1954 and asked if I wanted tea. Not a bad memory for someone in a hospital bed with a broken left hip.
She’d fallen at her assisted living facility. It was the second time in as many months. She’d broken her collarbone on the previous occasion.
Over the past year, she’d lost thirty pounds. This is natural in the progression of Alzheimer’s. But it’s upsetting to families all the same.
[...]
The morning after her hospital admission for the broken hip, the medical intern called me with an ethical dilemma: “She’s DNR,” [Do Not Resuscitate] the intern explained. “She’s having intermittent VTach on the monitor, and I fear she won’t be stable enough to have the hip repaired. The family is open to the idea of hospice, but I don’t know whether to treat the arrhythmia or not.”
[...]
We proceeded to discuss the medical issues with the patient’s son and daughter:
Advanced dementia
Weight loss
Multiple falls
Hip fracture
Anemia
Irregular, potentially unstable heart rhythm
“What would your mother want?” I asked them. “If she could decide for herself, what would her goals be?” Given her frailty, even with repairing the hip she’d never walk again.
Understandably, the concerns were about her suffering and feeling pain. At the moment, we were all in agreement that she looked comfortable. I broached the subject of not doing anything to treat the arrhythmia or the broken hip. Of not putting the patient through surgery.
The son was clear. “She wouldn’t want surgery,” he told us. His sister agreed. Consensus! We would refer her to hospice. She’d live out her days in comfort, forgoing the indignities of further medicalization.
At that moment, the orthopedic nurse practitioner walked into the room, carrying a consent form. She approached the opposite side of the bed. Before she could launch into her speech, I cut her off. “The family has decided on hospice,” I informed her. I asked to speak with her outside.
“We’ve only not operated on two occasions that I can remember,” the nurse practitioner told me. Her comment unnerved me. Clearly we were deviating from standard operating procedure here. “If a hip’s broken, we fix it,” is what she was telling me.
She documented our conversation and the fact that the family had declined surgery in the chart.
I went back in the room. I asked the family if they had any more questions. Satisfied that we’d answered everything to the best of our abilities, I excused myself and Elaine. We thanked the son and daughter for their courage, and affirmed that I thought they were making the right decision to forgo surgery.
Outside the room, we debriefed about the encounter. I was very proud of Elaine’s poise in a difficult patient/family situation, and how well she reasoned through the multiple options. I told her that I admired her instinct to mitigate harm to the patient by not over-medicalizing the situation, as many would have done since it’s almost always the path of least resistance in the hospital.
Alas, we congratulated ourselves too soon.
The next morning I came in to round. The patient’s name was still on our list.
We went to her room. She wasn’t there. But the bed was missing, too.
“Did the patient in 1214 get transferred to hospice?” I asked to no one in particular outside her room.
“She’s in the OR,” said the ward clerk.
What the fuck?
I was furious. A patient whose dying wish was to be made comfortable, at 94 with dementia, severe weight loss, who’d never walk again, had been “taken” to the operating room, possibly against her family’s wish to have her broken hip “pinned?”
How had this decision been made? Who’d made it? And why the fuck had nobody talked to me about it? As the attending physician, I was legally and ethically responsible for the care of the patient.
I called the OR. I got the surgeon on the phone. “This patient had an advance directive. Her son, who’s her power of attorney, wanted her to go to hospice. What’s she doing in the OR?”
“I’m just covering my colleague,” came the reply. “He consented her. I’m just going to ‘pin’ her hip, not repair or replace it. Please clarify this with the family and let me know what they want to do–as soon as you can–she’s already on the table and the spinal’s been administered.”
Great. The train had not only left the station, it was already hurtling down the tracks. I did not appreciate the ‘covering’ surgeon’s passivity. He was just doing what he’d been told. Hey, fella-how about taking some responsibility to clarify and verify things before cutting on anyone? Did it strike you as weird to take an emaciated, demented 94 year-old to the operating room?
Apparently not. Not at all. I remembered the nurse practitioner’s bizarre comment from the day before: “We’ve only not operated on a broken hip twice.” Is that because those patients were already dead?
I found the family in the surgical waiting area. Oddly, it was the patient’s other two daughters, not the power-of-attorney son and nurse daughter with whom I’d spoken the day before.
“Did you and your siblings consent to this procedure?” I asked them. “Yesterday your brother and sister told me that they wanted no further intervention–they wanted your mother to go to hospice to live out her remaining days in comfort.”
“Well, yes,” one of the daughters told me. “They told us it’s a minor operation and will just ‘stabilize’ things before she goes to hospice. They warned us that she’d be in pain any time she moved, and we didn’t want that. Isn’t this the right thing to do?”
With all my soul I wanted to scream at her, “Let your poor mother die! Why on earth would you subject her to this ridiculous ‘operation’ and spinal anesthesia? And what the fuck kind of surgeon comes by after the decision has been made and brainwashes a poor family into an unnecessary operation and doesn’t have the courtesy to discuss the ‘plan’ with the attending physician?”
But I didn’t say that.
She needed my support. “Well, this is among the most difficult situation anyone ever faces,” I said. “There’s no right answer. For some people, NOT doing surgery would be the right decision. For others, a sense of fixing what’s broken will seem like the right course of action.”
I asked the two sisters if their brother and other sister had agreed with this. I was surprised that they weren’t there at the scene. Perhaps the power-of-attorney brother who’d made a resolute decision a day earlier based on what his mother would have wanted had changed his mind. Perhaps he’d felt guilty disagreeing with his sisters, and wanted consensus above all else. Perhaps it really was a ‘minor’ procedure and the right course of action to mitigate the mother’s suffering.
But I’d seen her in her bed. She’d smiled at me. She’d discussed having tea. She wasn’t writhing uncomfortably or looking in distress.
I was angry. Had the consenting surgeon simply seen dollar signs? No broken hip goes unfixed? He’s a hammer and the patient was a nail?
Let me take the high road: Maybe he genuinely believed that pinning the patient’s hip would improve her quality of life in the days she had left. Maybe he had some evidence I’m unaware of that pinning hips in demented 94 year-old patients is the most efficacious plan of action. All bow down before the Gods of Evidence.
But he should have spoken with me. As a colleague. As a professional. As the one responsible for the patient’s care. Maybe he could have persuaded me that this was the right thing to do. Maybe he’d have even turned the tables and shown me that I was the one being inhumane. After all, how ‘right’ is it to send a feeble old woman to die with a broken hip?
Too bad for all involved here that his thought process was not made transparent. He and I will clearly be having a conversation, likely with hospital administration in attendance, about what happened here. This is a conversation we should ALL be having.

I rest my case.