This week’s blog continues the discussion of Legal Issues when someone has Dementia. The introductory installment (April 30, 2015) put forth the issue of “Who can speak for someone with dementia?” The May 14, 2015 installment discussed the situation where the person with dementia has Advance Directives in place. The May 21, 2015 installment discussed the legal issues in determining whether a dementia sufferer can choose to have new Advance Directives prepared. The May 30, 2015 installment discussed options in preparing a Health Care Power of Attorney. To continue the discussion of which Advance Directives to prepare and how to prepare them, today’s installment will discuss the Living Will.
Before the dementia takes away the person’s ability to make decisions, his or her support (family, friends, social workers, etc.) should encourage him or her to consider whether to prepare and execute a Living Will. (As I mentioned in a prior post, “execute” is a fancy legal word for signing one’s name on something official.)
A Living Will is a set of instructions that a person uses to tell his or her loved ones and medical professionals what the person wishes to happen if he or she falls into a persistent vegetative state. A crude but perhaps more understandable way to say “persistent vegetative state” is “brain dead.” So, a Living Will is a set of instructions on what to do about someone’s body if his or her brain is dead.
The Living Will concept grew out of the publicity surrounding the persistent vegetative state of Karen Ann Quinlan in 1975 until her death in 1985. Ms. Quinlan stopped breathing after consuming alcohol and valium on an empty stomach. She is estimated to have gone without breathing for at least 15 minutes. The resulting damage to her brain put her into a persistent vegetative state.
The hospital in which she was treated placed her on a mechanical ventilator (, a respirator.) Her parents wished not to have her body linger in such a condition because of artificial support and asked for removal of the respirator. The hospital refused. The prosecuting attorney threatened to bring homicide charges if the respirator were removed. (Remember, there was no law at this time allowing the removal of the respirator.) After many months and a court case that got appealed to the state supreme court, her parents received permission to have the respirator removed. Ms. Quinlan remained in her persistent vegetative state from the removal of her respirator in 1976 until her death from pneumonia in 1985.
Terri Schaivo, who was in the news between 1998 and 2005, shows the need for a Living Will. In 1990, Ms. Schaivo collapsed in her home in cardiac arrest and went into a persistent vegetative state. Her husband, appointed by a court to be her guardian, tried several different therapies to bring her back to consciousness. Seeing no progress, in 1998, her husband/guardian asked for her feeding tube to be removed. Her parents opposed the request, and the dispute went on in a number of court cases until 2005, when the feeding tube was removed. She passed away about two weeks later.
Ms Schiavo did not have a Living Will, so the courts were forced to figure out what she would have decided for herself, if she had been able to decide. If she had left a Living Will, the courts would have known her wishes.
When deciding whether to prepare a Living Will and what instructions to leave, a person should consider a number of questions that can help reach a decision:
Of course, all of these questions are hard or impossible to answer. No one who has been brain dead has come back to consciousness to tell the world about the experience. (Many people have returned from a coma, but a coma is not a persistent vegetative state.) In answering these questions, one can only make a best guess.
Depending how someone answers these questions, he or she can decide whether to:
In addition, in Ohio anyway, a person who leaves instructions not to have artificial life support if they are in a persistent vegetative state must make an additional decision about artificial nutrition (a feeding tube) and artificial hydration (most likely an intravenous tube.) This decision depends on
The Ohio Living Will form has a place to indicate a choice about hydration and nutrition.
No matter what someone decides about the use of artificial respiration, artificial nutrition, and artificial hydration (assuming the someone didn’t cop-out and decide not to decide,) the person should leave behind written, notarized instructions. The decision and the location of the instructions should be shared with all important family members. (Any family member who doesn’t find out about the Living Will until the loved one is in the persistent vegetative state is likely to oppose the decision and possibly go to court about it.)