Getting Consensus on Pulling the Plug

If you are the person charged with handling your loved one’s estate after their death or incapacity, you very well may also be on the short list to make life or death medical decisions for them.

I will never forget the phone call I got when my Mom was in extended care after receiving a hip pin due to falling and breaking her hip bone. She was a young and pretty healthy 79. She was a few days from discharge. She had some kind of event, that was never explained to me. The phone call I received was from a doctor, riding on top of her astride a hospital gurney as she was wheeled from extended care back into the hospital. The doctor was performing CPR. Mom was dead but being resuscitated. Mom’s sister, in St. Louis had refused to make the call as to whether she should be resuscitated. I quickly consulted with my brother, as I knew Mom had a living will that stated she didn’t want extraordinary means taken. We decided that she should be resuscitated, that this wasn’t end of life.

They successfully brought her back. In the ICU, she was intubated because her lungs filled with fluids and she couldn’t breathe on her own. She was there for weeks. She was conscious and seemed lucid – although she couldn’t speak. We gave her Christmas presents in the ICU – which she opened. She cried. We thought she would get better, but she didn’t. Weeks on weeks of medical procedures and exposure to who knows what kind of nasty hospital infections caused her to eventually succumb to multiple organ failure. Her doctors pressed hard for my brother and I to ‘pull the plug’. We resisted, but finally did it. It has been 17 years and making that decision still haunts us both.

All of her doctors were in agreement, her pastor didn’t object and her sister just plain disappeared, not wanting Mom to suffer yet not able to make the choice to remove life support and let her go. It had been weeks since Mom had been awake or aware, her liver, kidneys, heart and other organs were failing. She was bleeding into her bowel bag. Her lungs would not clear. We didn’t know if she was in pain or not.

CNN, the Chart article Families haunted by end-of-life decisions  aptly describes the feelings my brother and I experience:

“Family members felt they let their loved ones die by removing life support.  Those who left patients on life support felt responsible for prolonging their suffering.”

Yet, as Julie Mack says, in Michigan Live’s article, Medicare and rationing: When should we pull the plug on grandma?

“ Death is not always the worst outcome.”

But we all feel like death is a failure, that we should have and could have done something to let our loved one live.

How can you, as the trusted family executor or executrix, help the family and friends come to agreement on what should be done in an end of life decision. For, if there is no legal document stating desired outcomes, it is advisable to make sure you do get agreement. Even if your loved one has expressed their wishes, both verbally and in a living will, you may be in for a fight if consensus is not reached on the condition of the patient. Some may feel that if you give her just a few days more, something will occur and she will start to get better. Others may feel strongly that you are going against her wishes and that her only natural course of action is death.

As the University of Chicago library interview addressing ‘How should people die‘ noted:

“Sometimes problems can arise. For example, when the patient is suddenly dying and the whole family gets together and you have a relative come in from California that hasn’t seen the loved one in years, and suddenly they’re upset because they don’t want you to carry out that patient’s wishes. That’s why it is very important to have it done legally, so that you can follow up the patient’s wishes.”

In reaching consensus, it is very important for all to understand what has been done, what options there might be and talk through what each believes the patient would want given these circumstances. Large disagreements can occur if the choices present the possibility of life outside the hospital, but in a continued vegetative state.

In that same interview Tikva Frymer-Kensky rightly noted

“There is a difference between killing and removing an impediment to dying. And there are things we can do which prolong dying by placing impediments in its way. They aren’t going to cure, and they aren’t going to prevent suffering.”

“We can–and I make the distinction very clear–we can remove an impediment to dying, but we cannot hasten death. I think that it’s absolutely crucial for the moral fiber of our society to maintain that distinction.”

Nurse Angela Morrow, in Deciding to Withhold or Withdraw Life Sustaining Measures  recommends gathering close relatives and very close friends to discuss what the patient would have wanted. She says:

“It is best when all the patient’s loved ones can agree on whether to withhold or withdraw life support. If a unanimous decision can’t be made, it may be helpful to try mediation. A social worker or chaplain can often help mediate difficult situations like these. The decision will ultimately fall to the designated or default surrogate but if all the patient’s loved ones can participate in the decision making process, it can help foster closer relationships and prevent resentment (and lawsuits).”

Even if you do reach consensus, the participating deciders may suffer in the days, weeks or even years to come because of feelings of guilt and uncertainty about whether the proper decision was reached. Get some support. Get some help. Line up some help for all of you.

If you think you may be faced with such a decision in the future, consider reviewing the below sources:

On the Health Care Blog  an ICU nurse describes some of the pain your unconscious loved one may be enduring.

NBC News  states that in absence of a directive or a family decision maker, the culture of whatever ICU your patient hits may be a factor in determining how end of life decisions are made.

If you are an executor, health care proxy holder, or even if you just have close elderly relatives, think about having that awful and difficult conversation with them to find out what they think they want if they end up in a situation where they are on life support equipment. What do YOU want if you are in that same situation some day?