Much of the news in these last weeks has concerned the case of Terry Schiavo. As we all know, she has been in a persistent vegetative state for the past 15 years kept alive only by artificial hydration and food intake through a feeding tube. Her husband insists that she would not want to continue living this way when there is no possibility of recovery. Her parents and family insist that she is not in a vegetative state but can react to stimuli, and that she would want to live, no matter what. Involved in this case, and making decisions supposedly on Terry’s behalf have been: politicians, Congress, President Bush, the Florida legislature, Governor Bush, the courts, Terry’s family, Terry’s husband, and demonstrators with opposing interests. The person who has not been involved is Terry Chiavo. She may have expressed her wishes to family and spouse, but she never wrote them down or put in place a health care directive. So, when her life hangs in the balance, everyone else will use their own judgment and values to try to determine her interests.
The State of Minnesota may, if it passes proposed legislation, put people in our state in the same position. Legislation was introduced on Monday, March 28th which, if passed, would indicate that for persons who did not have a written health care directive, even if others knew of their wishes, it would be presumed that he/she should live at all costs and that all means be used to keep someone alive. This would put others in the situation that Terry Schiavo is in now. To avoid having this happen to us, it is imperative that we all have health care directives put in place while we are legally competent and can make decisions for ourselves. Then, if we become incapacitated or mentally incompetent, we have some reason to believe our wishes will be followed.
What is a Health Care Directive
Minnesota recognizes the validity of properly executed health care directive. In Minnesota this replaces and expands upon a living will, still used in many states. Living Wills merely indicate what kinds of procedures and extraordinary measure you did or did not want followed to keep you alive. A health care directive, on the other hand, gives you a chance to plan what you would want done in particular circumstances, where you want to live out your final illness, how you want your body handled after death, where you want to be hospitalized and which doctors you want to have anything to say about your care, under what conditions extraordinary measures should or should not be used. You can put together a health care directive which merely states what you want done. If you do this, without putting someone in charge to make decisions for you or carry out decisions you have already made, (an agent), you will need to have this directive filed with the hospital, your doctors, your care providers, and any family or friends you would want involved.
It is better, if you have one or two people you trust who could perform this service for you, to have an agent and an alternate agent appointed to see to your wishes. This kind of health care directive only needs to be notarized, but we suggest you have two witnesses sign as well. The witnesses are attesting, as is the notary, that they witnessed you signing the document. Your agent cannot be either your witness or your notary.
Considerations in Whom to Appoint as Your Agents
1. Your agent and alternate agent must be at least 18 years of age.
2. The agents should be people you trust to carry out your wishes even if those wishes are contrary to their own beliefs.
3. Of course, it is best if you have agents who have the same beliefs about end of life issues as you do.
4. Your agents should be people who can withstand stress, if your decisions are controversial to other relatives and friends, and who will not give in to this pressure but will follow your wishes.
5. Finally, your agents should be prepared to make very difficult decisions about end-of-life issues on your behalf.
6. If you have alternate agents, which we recommend, you will need to prioritize whether there’s a primary agent, who can act alone and a secondary agent, who acts if the primary agent is not available. You could also decide that your agents have to agree upon a decision and act together. An employee of your health care provider cannot be your agent unless that person is related to you, is your spouse or domestic partner, or you give specific reasons why you want that person involved in your care.
7. Do not ask your agent to help you do something unreasonable or illegal, such as assist you in committing suicide. It would put your agent in an extremely difficult situation. Legally an agent could not carry out this wish without being charged with murder.
8. Do not put your master copy of your health care directive in a safety deposit box unless your agent is also a co-signer to open your safety deposit box. Put your document in another place where you keep important papers.
Questions to Consider
1. How important is pain control to you?
A. I want to be as comfortable and free from pain as possible;
B. I want to have my pain controlled at all costs, even if my thinking ability is reduced;
C. I want to have my pain controlled even if it shortens my life;
D. I want to be alert and able to think as long as possible and am willing to have some pain to stay alert.
2. How important to you is prolonging your life? When would you want equipment to be used to do this, and when would you want it removed?
A. I have at least a 50/50 or more chance of recovery, then use life prolonging measures;
B. I have physical limitations resulting from my condition, but with time, I can adapt. Therefore, use life prolonging measures;
C. If I am no longer able to socially relate to or recognize those I care about, and there is little likelihood of my regaining such abilities, then do not prolong my life;
D. If I have a terminal illness, and additional treatment will only delay, not stop the dying process, then don’t use life-saving interventions;
E. If I have severe brain damage and it is unlikely that I will ever regain consciousness, then do not use life-prolonging measures;
F. If I have severe dementia and my condition will only get worse, then do not use extraordinary measures to prolong my life;
I. I do not want my life prolonged if it causes financial burdens to my family, etc. or:
J. I do not want financial considerations to determine whether my life is prolonged.
K. I want my life prolonged as long as possible.
Use of Medical Procedures to Prolong Life
A. Use of ventilators or respirators, (if you don’t want machines used when you can’t breathe on your own, ask that a “do not intubate” (DNI)) order is placed in your record;
B. Use of feeding tube to supply food and liquid to prolong life indefinitely when you can no longer eat: If you don’t want that done be sure to so indicate;
C. If you go into cardiac arrest and you don’t want to be resuscitated by use of CPR, have a Ado not resuscitate: order (DNR) placed in your record;
D. length of time you will accept being on dialysis, blood transfusion, or other invasive procedures or surgeries that ultimately will not help you to recover;
E. If you’re pregnant, your feelings about whether to prioritize your life or that of the baby if such prioritization is necessary because of a health crisis.
If you have religious beliefs that would affect your health care, (such as beliefs that one should not interfere at any cost with the dying process) you should list those beliefs and values so that your agent or health care provider knows what decisions you would make. If you belong to a church, synagogue, mosque, etc., name it with the address and spiritual leader. If you want that person called when you are dying, or you want communion or last rites, or some other special religious procedure or ritual, etc., include that information.
List your choice about receiving care when you are dying: home, hospice, hospital, nursing home, etc. You may also say you’d like to be at home, if possible and your family agrees, but will accept care in other institutions if that is necessary.
Keep a master list of all who have a copy of your health care directive. Then make sure, if you change your directive, that all those people have copies of the new language.
You can update or revise your directive any time so long as you remain competent. Each update should be dated with the latest one to be followed. Use language such as:
Amy most recent health care directive was completed on “(month, date, year)”
You may wish to change your directive for the following reasons:
1. You want to change or remove an agent.
2. You no longer want the person you named as your “agent”.
3. You realize that your ideas about a particular part of your directive have changed;
4. You’ve moved to a different state, in which case you will need to make sure that your directive follows the law of the state you are now in;
5.Your agent is no longer available, (he/she is incapacitated, has moved too far away, is deceased, etc.)
Give copies of your valid health care directive to:
Health care providers including your doctors, the hospital or nursing home you are in, your service provider if you are on a home and community-based waiver, your agent/s, family members, close friends.
Keep a note in your wallet indicating that you have a health care directive and where it can be found. You can indicate this on your drivers license or state ID card. Click on the link for a sample health care directive form.
Websites for Additional Information and Forms
www.mnaging.org/seniors/assistance/directive.html. This site is the site of the Minnesota Board on Aging. It has a good directive plus instruction sheets that allow you to figure out what you need. Unfortunately, this site, along with several others, uses PDF format and is not terribly accessible to blind persons who use screen readers.
www.mnhospice.org: click on advanced directives. This is the site for Minnesota Hospice Association and has several good references about health care, what care givers need to know, and other useful information.
www.aarp.org/life/endoflife/ American Association of Retired People.
The Minnesota Disability Law Center has a joint mental health care directive and general health care directive. To obtain a copy, call or write Minnesota Disability Law Center, 430 First Av. N., Ste. 300