FOR THOSE AT DEATH'S DOOR, A CASE FOR 'LIFE PANELS'
c.2013 New York Times News Service
At the beginning of 2012, my mother was 95 years old. She lived in an assisted-living center, with hospice care, in a hospital bed 24/7. She was hollow-eyed and emaciated. Although she had moments of clarity, she was confused, anxious and uncomfortable. Her quality of life was minimal, at best. And the cost to keep her in this condition had risen to close to $100,000 a year.
Three years earlier, when she was completely rational, my mother told me that while she had lived a full and rewarding life, she was ready to go. By 2012, when her life was more punishment than reward, she did not have the mental faculties to reaffirm her desire nor was there a legal way to carry out her decision. Even if my mother had been living in one of the states like Oregon, Washington or Vermont that have “death with dignity” statutes on their books, the fact that she lacked mental competency to request an assisted death by 2012 almost certainly would have ruled out any possibility that the state would have granted her wish.
Nor would it have been an option to move her to one of the few countries that have removed the legal perils of a decision to end one’s life. It was hard enough to get my mother from her bed to her chair. How would I have transported her to the Netherlands?
No, there is only one solution to this type of situation, for anyone who may encounter it in the future. What is needed here, I suggest, is not a death panel. It’s a “life panel” with the legal authority to ensure that my mother’s request to end her own life, on her own terms, would be honored.
I am staking a claim on the name life panel, because the concept of death panels has been so irresponsibly bandied about during debates about the government’s involvement in health care. But I really do not want to discuss politics here. I am a financial planner, and I want to focus on money.
The financial aspects of the end of life are an integral part of almost every plan I create. If planning is about getting from Point A to Point B, you do not get a bigger or more definitive Point B than your own funeral.
Some of my clients are extremely realistic about the crushing expenses they could face in their final years. Others are more sanguine. When I tell them that their money is unlikely to last through their 90s, they say: “Well, that’s OK. I don’t plan to live past 85, anyway.” I have a standard answer in these cases. I say: “Yes, you expect to die at 85, but what if you’re unlucky? What if you live to 95?” At that point, I tell them about my mother. Then we get down to work.
Occasionally, people tell me that their end dates are guaranteed. They are saving pills that will put them out of their misery, or they have made “arrangements” with friends. For all their planning, my clients do not realize that when the time comes, they may be too sick or demented to carry out their do-it-yourself strategies. And so we come back to the life panel. Who is on it? Certainly, a doctor would be involved. After all, we laymen might feel guilty about making decisions that would hasten the end of a life, but under current law in most states, doctors would be guilty — of murder. On a life panel, a doctor would be held blameless. And I would have no problem adding a medical ethicist and a therapist.
Most important, I think the individual should be allowed to nominate panelists who are likely to understand the person’s wishes: family members, close friends, a person with whom they share religious beliefs.
This may seem like a reach, but in fact we already come quite close to this now. As any financial planner will tell you, everyone needs a living will. This is a legal document that instructs a surrogate or a medical center on the level of life-prolonging or palliative care you want if you become unable to make medical decisions.
But legal documents go only so far. Doctors I have asked about this issue know firsthand the uncertainties of deciding when a person has lost medical decision-making capacity. Nor is it possible to write out instructions for every possible medical eventuality.(BEGIN OPTIONAL TRIM.)
A life panel might not be the perfect solution but neither is draining a family’s resources to support a joyless existence in a hospital bed.
Those who understand the high cost of quality care often compliment me on what a good son I am to pay so much for my mother for so long. The truth is, it was her money. But it was my money, and my children’s money as well, at least according to my mother. My parents did not want to “die with just a dollar.” They worked hard behind the counter of a small retail store to leave money to their children. It was of primary importance to them, as it is to many of my clients.
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So what should have been done for my mother?
Three years before, deciding to convene a life panel was a choice she could have made herself. I can almost see the members of the panel squeezed into her studio apartment as she informed them, as she frequently informed me, that while she had enjoyed a wonderful life, “enough was enough.”
The panel might have rejected this appeal, as I did many times over the years. They would have checked her medications, scheduled her with a geriatric psychiatrist and suggested that she return to the wheelchair bocce team that had won the championship at her assisted living center. At the end of the meeting, they would have promised to review her case regularly, to see if her mind — or her body — had changed.
In the years that followed, it would have been up to me, as her surrogate, to keep the life panel informed. If and when the panel did agree that the quality of her life was not what she would have wanted to preserve, it could have ordered a prescription for intravenous morphine for her doctor to administer. Or, in do-it-yourself mode, we could have used a fentanyl patch. Either drug in higher-than-therapeutic doses is painless and very effective.
Instead of the uncertainty that leaves so many people racing back and forth across the country to be at the deathbed of a loved one, my mother’s end would have been scheduled, so family and friends would be sure to be present. There would have been grief, but not, I think, a lot of regret. The life panel would not have made an arbitrary decision to end my mother’s life. This would not have been a judgment based on societal or governmental standards. The panel would have simply, and thoughtfully, carried out my mother’s wishes.
Does all of this sound gloomy? I’m not sure. Is it worth whatever money it costs to keep everyone alive as long as possible, no matter how terrible their lives may be? I don’t know. What I do know is that the expense of prolonging our lives can be devastating. There has to be a better way.
As for my mother, convening a life panel is no longer a possibility. She died later in 2012. Thanks largely to hospice care in her final days, it was a relatively easy passing from my point of view and certainly a lot less painful than the months and years before had been. That is why I still think it should have happened at least three years earlier.
A life panel might not have agreed, but at least the issues would be aired.
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With a life panel, we could have ensured a timely and respectful end. But with society unprepared to face the reality of death, there could have been one other solution for my mother, one that is still available for many others like her. On one of my visits, I could have put on my financial planner hat and told my mother exactly how much her end-of-life care was costing. Because I was handling her affairs, she never knew the price tag.
I’m sure she would not have believed it, and I doubt she would have survived it.