I'm frequently asked for advice regarding the initiation of life support measures. Families want to know whether they should start artificial tube feedings for their loved one who can no longer eat, or whether to allow doctors to intubate their loved one to give them a chance at a longer life. I can offer generalized statistics on survival and advice on quality of life but ultimately the decision should always be based on the patient's and the family's personal goals, not mine. I'm always happy to offer some advice to these struggling families and I'm always thankful when the conversation happens before life support measures are already in place.
Once a patient is receiving artificial nutrition or placed on mechanical ventilation, the ethical waters become dark and murky. When do you say that the treatment is futile? What if your loved one wants to continue living? What if you stop life support just days before they would have gotten better? In the case of J.P. in Virginia, he's questioning whether palliative care is right for his mother who suffered a massive bilateral stroke and is now on a feeding tube and has a tracheotomy, which is a tube inserted through the neck into the trachea to help a person breath. Murky waters considering the course of stroke patients can be widely variable.
Thankfully, withdrawing life support usually isn't a one party decision. This is a good thing because a decision that monumental should never be placed on one person. The patients legal decision maker, family members, health care team, and an ethics committee can all play a part in making the decision to stop life support.
Every hospital and health care agency has an ethics committee who's sole purpose is to discuss issues that are ethically controversial. The committee is usually called to discuss cases of withdrawing life support when the decision proves difficult. These committee's typically include people from different disciplines and backgrounds to give a wide perspective of the situation.
J.P has done the right thing by talking with doctors, chaplains and other clergy, and a local hospice agency. He's also searching for as much information as he can find online. Regardless of all the information he gathers and all the advice he gets, his decision will be difficult and extremely personal.
If you're faced with the decision to withdraw life support of a loved one, ask for as much support as possible to ease your burden. The decision will never be easy but it should never be one you have to face alone.
For more information on making difficult decisions, see:
Making Difficult Medical Decisions
Withholding or Withdrawing Life Support
Artificial Nutrition and Hydration
Make Your Wishes Known: Advance Health Care Directives
Do you have any advice for J.P.? Share your thoughts and ideas here.
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It is helpful if the decision maker has some idea of what the patient’s wishes would be in their particular situation. This can provide the compass to guide the family through the decision making process. Try to get in touch/talk about /discuss/contemplate/pray about/meditate on what you think your parent would want…that process alone will help in making and carrying out the decision.
In my son’s case, the family was never consulted. My son was incarcerated for violating a restraining order. He was suffering from mental illness. Five days after his arrest, he was declared brain dead. Before the declaration, the DA had all charges against him dismissed. We were told that morning that he would be removed from ventilator at 6:30 that same evening. He was no longer in custody yet we were uninformed about his condition. No one on medical staff talked to us except to tell us what they had decided. His wife asked for another day in order that his six young daughters could spend time with their dad and for her sisters to arrive from out of state. She was denied. Was that legal?
I’m so sorry, Marilyn. That is a tragic story. I’m not certain about the legality of the situation but the way it was handled was certainly not ethical. If you are concerned about the legality of it, I would recommend consulting an attorney. I hope your family is able to find healing from this horrible tragedy.
Thank you for your post. We do have an attorney and have already filed a lawsuit. We do believe that the Sheriff authorized the disconnection of the life support on my son, Craig. I wanted some discussion about the legality of what he did. It has created a number of questions for the entire community as to who would be held responsible, the hospital or (and) the Sheriff.