Procedural safeguards are necessary and important, but they should not result in the suffering of those they are meant to protect. Connecticut has made great strides in the last few years toward seeking greater protections for people who have been conserved by the probate courts. Revised statutes in 2007 and 2013 provide enhanced safeguards for these individuals. For example, stricter notice requirements insure that family members and all interested parties are apprised of conserved peoples’ whereabouts. Implicit in the statutes is an emphasis on allowing conserved persons greater self-determination while in the care of the courts.
Yet for a small group of people, usually the elderly who are at the end of their lives and suffering medical crises, our statutes may have an unintended effect. Procedural requirements that normally function to protect the liberty interests of conserved people instead result in maintaining them in a kind of holding pattern while they are subject to ongoing, aggressive, often painful medical treatment. Such treatment offers them no possibility of cure and only causes suffering.
Consider the following recent example: A 94-year-old woman with advanced dementia and a gangrenous leg. The only effective treatment for the leg was amputation, but she would not survive this surgery. The gangrene spread into her blood, causing sepsis. Sepsis could progress to septic shock, a life-threatening condition. Her blood pressure was dangerously low. She could no longer function or even eat on her own so a feeding tube was inserted into her abdomen to reach her stomach. She was categorized as failing to thrive. Her leg caused her pain and she required doses of narcotics to blunt the pain.
The physician at her nursing home believed that nothing could stop the course of her illness — there was no cure for her leg, the condition of which would only continue to deteriorate, and there was no cure for her failure to thrive. She did not have advanced directives. He asked the conservator to agree to a “comfort measures only” (CMO) status for her, whereby she would be given pain medication as needed and made comfortable in her bed at the nursing home. She would no longer be treated medically, that is, sent to the hospital or to medical appointments as various conditions arose, which would happen with increasing frequency as she declined. With CMO, or hospice care, she would die soon, but comfortably, in her bed at the nursing home, cared for by people with whom she was familiar.
The conservator could not agree to CMO because the statute that governs health care decision-making, General Statute §45a-656 (a) (3), does not expressly state that conservators may make life-and-death decisions. The conservator thus filed an emergency motion in probate court seeking permission to agree to CMO. The motion was misfiled. Several weeks later, discovering this, the conservator refiled her motion. The motion was scheduled for a day the judge would subsequently have to cancel hearings.
The motion was finally heard one month after it was originally filed. At the hearing, someone realized that one person who should have received notice of the hearing did not. It seemed that the hearing would have to be rescheduled to allow time to find an address for the person and to provide him with notice.
During the month after the conservator originally filed her motion, the woman was transferred from the nursing home to the hospital and back two times. While in the hospital she spent one week in the intensive care unit. In the hospital she was subject to aggressive treatment by concerned medical teams who had to continue what they were doing because the conservator could not consent to CMO. Her physicians openly questioned whether it was ethical for them to continue treatment given her condition. The medical staff agreed that it was in her best interest to be sent back to the nursing home and kept comfortable.
Among the worst procedures that the elderly may face in these situations is rib-cracking cardiopulmonary resuscitation should their heart stop beating. If they survive this intervention, they never recover fully because their aged bones no longer heal. If a patient is unable to breathe on his own, an endotracheal tube will be placed down his throat and connected to a mechanical ventilator that breathes for him. With the tube in place, patients cannot speak or swallow and they must be heavily sedated to control the panic they feel. Frequently their hands are tied to their bed; otherwise they will try to tear the tube out. Forty-year-olds describe experiencing post-traumatic stress after placement of an endotracheal tube. Imagine how an elderly person with dementia copes, if at all.
The list of procedures goes on. A catheter may be placed into a vein in the neck close to the heart to administer vasopressors to maintain blood pressure and inotropes to help the heart pump. This is an invasive procedure that carries a high risk of infection and artery or lung puncture. Bedsores may develop across the patient’s entire back. Lines attached to support devices are placed in thin, feeble veins, and tubes are introduced into every orifice. Even moving in bed is painful because the movement tears tape that is holding the lines from fragile skin. Sleep is constantly interrupted throughout the night because of blood draws and vital sign checks. Indeed, in the ICU lights and beeping alarms are never really turned off, and, as a result of this, the elderly may experience a kind of psychosis called ICU delirium.
All of the above, and more, is experienced by elderly, conserved people while alone in a series of hospital rooms, cared for by strangers — constantly revolving shifts of medical personnel.
These are not otherwise healthy people who will recover and have a long life to look forward to, for whom aggressive measures make sense. These are frail people at the end of their lives who are being treated for conditions for which there is no cure and no possible recovery. The purpose of the “treatment,” and one uses the term cautiously in these situations, is solely to bide time pending a probate decision.
I am not writing this piece critical of how the probate court functions. The court in which I do most of my work does a wonderful job with all its cases. Probate courts provide a safety net for hundreds of people who would otherwise have no one to look after them.
But procedural requirements take time to process. And in busy courts, even with the best staff, mistakes happen, motions are lost, hearings must be continued. Our statutes function well on behalf of people under ordinary circumstances. In emergency situations, they do not provide conservators with a way to fast-track judicial decisions having to do with life-and-death matters.
Studies show that where there is no chance of recovery, the vast majority of people do not want aggressive measures at the end of their lives. If a conserved person is incapable of telling us what she wants under these circumstances, is it ethical for us to ignore her suffering while we wait as the probate process drags on? Treatment imposed on people without informed consent may be harmful, or medical battery. Do people lose the right to be free of harm when they are conserved? And what of the “best interest” standard that governs probate determination regarding conserved people? It appears that in these situations we abandon the standard.
Would any of us want a family member to spend the last days of their lives in the manner I have described above in the interest of, for example, seeking the address of a long lost nephew who has not seen his aunt in 20 years, to satisfy notice requirements? And if that nephew is found and objects to the motion for CMO, then what? Is it ethical for us under these circumstances to attend to every statutory requirement and every procedural detail, no matter where they lead and no matter their consequences?
Many may think that what I have described above happens to so few people that it is not a matter of great importance in the larger scheme of things. But if the probate court is really meant to serve as a bulwark against the abuse of conserved people, we must recognize that our statutes as they are currently written do not function well under all circumstances. Probate administration should work with the legislature to address gaps in the statutes in order to meet the needs of conserved people in medical situations that require an immediate response.•