I am acutely tempted to answer, “Of course not — my father would not want heroic measures.” But I hesitate because I know it might not be true. In the past, he has wanted everything possible done. This night is different, but I do not know if his answer would be different.

I look at my father. It is hard to tell if he is conscious. No one else is looking at my father. Everyone is watching me closely.

Finally, I say out loud the only thing I know to be true. “In the past, my father has asked that everything possible be done.”

Then I bend over my father and ask him in a clear, strong voice: “Daddy, do you want to be intubated again? Squeeze my hand if you want to be intubated.” I wait, but he does not squeeze. Instead, he surprises us all by nodding his head. He is weak, but the nod is unmistakable.

In the story, the nurses seem annoyed that they chose this invasive procedure.

What the doctor and nurses do not know, what I hesitate to admit even to myself, is that I almost gave them the answer they wanted: the reasonable one. But I would have been terribly wrong.

My father never really recovered. He could never again breathe without a respirator, he never left the hospital bed, and he eventually needed dialysis and a feeding tube. Six months later he died of heart failure.

I suppose my father’s decision was a mistake. But it was his mistake to make, not mine. My role was to support my father, no matter what, and to tell the truth, no matter how hard.

This is why when I talk to my clients about their health care proxy, I stress that it is not just enough to appoint someone to make those health care decisions, you must talk to them about the decisions you want them to make. You have to actually have the conversations about end of life care, intubation, feeding tubes and all those things that make most people uncomfortable. You also have to make sure that you are appointing someone who is capable of communicating your wishes during a medical crisis.

A lot of my clients use the Five Wishes Living Will to help them with these decisions. Other choose a living will designed by their church, still others write their own.  The important thing is that you do it, and then talk about it with those people to whom you are giving the authority to communicate those decisions.  And then trust that they will convey your wishes, not theirs.

Once you have signed your health care proxy and given a copy to your health care agent, your doctor, and perhaps put a copy in your glove compartment, your work is not done.  It is very important to let your health care agent know what your wishes are so that they know what decisions you would like made for you when you are unable to communicate those wishes. 

A person's statement of their wishes regarding health care is often called a Living Will, or life support statement.  While these documents are not legally binding in Massachusetts (only the Health Care Proxy is), I recommend to my clients that they think about signing a Living Will.  There are a few different ways to communicate your health care wishes:

• You can write a simple handwritten or typed note and sign it and keep it with your health care proxy,
• You can complete a workbook such as Five Wishes (the document I give to my clients) or Your Way, 
• You can complete and sign a document handed out by your church or religious organization which lays out the requirements for end of life care, or
• You can even just have a conversation with your health care agent about what you might want in different situations. 

The important thing is that your health care agent knows what your beliefs and wishes are surrounding medical care and end of life care.  And if you know someone has appointed you as their health care agent, then you should talk to them about their wishes.

If you haven't done any planning, you may wish to download one of the living will documents linked above to get you started, and then get in touch with an attorney to make sure that your wishes will be honored. 

In Massachusetts, a living will is not a legally binding document.  Every person over 18 in Massachusetts should have a Health Care Proxy which is the legal document appointing someone to make medical decisions for you in the event you are unable.  In addition to signing the health care proxy, you should let your health care agent know what you wishes are for medical care, and writing down those wishes is often the best way to make sure they remember your wishes in the moment of crisis.  Writing down your wishes also lets your other family members know that your agent is carrying out your decisions, rather than making their own. 

More information on recording your wishes for medical care is available at Put It In Writing and you can download a free toolkit for advance care planning from the American Bar Association. 

A health care proxy and living will are usually part of a standard estate plan, but you can also obtain them from your doctor. 

Thanks to David Goldman of the Florida Estate Planning Lawyer Blog for his post on this subject.  Keep in mind that the rules regarding health care decision making, and the documents which govern that decision making, vary from state to state. 

The author recounts her experience with her family trying to deal with her grandfather’s illness and their attempts to interpret his wishes about the end of his life.  She writes:

…the experience made me realize that having a living will isn’t
enough — we need to be sure that we have been clear and specific, and
that we have considered a variety of scenarios as we try to instruct
our loved ones to make decisions for us in a medical crisis. Phrases
like “terminal illness” are vague at a time when new treatments and
drugs can keep patients with a terminal disease alive for months or
years.

Many people prepare a "Living Will" or "Life Support Statement" as part of their estate plan.  As the author indicates, these documents are sometimes filled with vague statements about death being a natural part of life, and "heroic measures", which can make it difficult for your family to interpret in their time of grief.

I explain to my clients that even if they sign a Living Will, it is very important that they also have conversations with their loved ones about the different types of situations that can arise and what they might want done in those cases.  These conversations do not need to be a big, formal, one-time thing. They can occur if something is in the news about end of life care, or if a friend or relative is going through something similar.  It can be easier for your family to remember this way – "Oh, I remember when Aunt Peg was in the final stages of breast cancer, mom said she wouldn’t want another surgery if that happened to her." 

The Mayo Clinic also has a great guide for discussing your last wishes.  It outlines the different treatments that you’ll want to address: resuscitation, mechanical ventilation, nutrition and hydration assistance, dialysis and treatments at the end of life.  It also reminds you to revisit your wishes from time to time to see if they change – for instance during pregnancy or if you are diagnosed with a terminal illness. 

Dr. Ferdinando L. Mirarchi, chairman of emergency medicine at Hamot
Medical Center in Erie, Pa., tells of a very active 64-year-old woman
who nearly died because a nurse read her living will as a D.N.R.
statement. The woman had slipped on ice and broken a leg, which was
reset surgically. On the second postoperative day she began bleeding in
her abdomen, and excreted and vomited blood. But the nurse saw her
living will and told the physician on call that she was D.N.R. and thus
did not warrant admission to the intensive care unit. Fortunately,
another physician overrode the nurse’s interpretation and resuscitated
the woman, who successfully underwent emergency surgery to stop the
bleeding.

You should consider whether you want life saving treatment in the case of certain diseases but not in others:

Medical consultants writing in Patient Care (Nov. 15, 2000) noted that
“the less inclusive a living will is, the more trouble it can cause.”
Doctors may be uncomfortable following vague directives. The
consultants suggested that living wills could be more useful if the
directives were disease specific. For example, if you have emphysema, you may want to accept antibiotics and mechanical ventilation if you
develop pneumonia, but you may not want such treatment if you are near
death from cancer.

A good Living Will/Health Care Proxy combination is the Five Wishes which asks  you to really explore what decisions you want made for you, and how you want to be treated at the end of your life.  This is the document I provide to my clients who need Living Wills.

Living Wills are not legally binding in Massachusetts, but you should still execute one because it will provide guidance to your health care agent and medical providers, and you could find yourself injured in a state where Living Wills are legally binding.

Shelly decided that she wanted to be kept alive until the baby was viable. Have you thought about if you want to change your plans? And more importantly, have you told the person who would have to make this decision if you were unable?

While the spotlight this time last year on the Terri Schiavo case
brought forth a great deal of discussion generated about life and death
issues, the National Academy of Elder Law Attorneys (NAELA) stresses
that the preparation of advance directives (living will, health care
power of attorney and health care proxy) is extremely important for
everyone over the age of 18. According to a Dec 2004 NAELA survey of
elder issues, only one third of adults 35-49 have a living will.   

In addition, it’s important to note the differences from state to state in requirements for advance directives. (See below.)   

NAELA advises consumers to consider five key questions when speaking with an elder law attorney about a living will, health care power of attorney and health care proxy:   

1. Who will serve as your Agent for Health Care? Who will serve as the alternate?   

2. Are there certain medical treatments or pain control measures you want or don’t want?   

3. Do you wish to take or refuse any medication that may reduce or eliminate the ability to communicate?   

4. Do you have any particular directions regarding specific health care
facilities, religious preferences, disposition of your body, donation
of bodily parts for transplant or research, etc?

5. What directions will you provide related to end-of life decisions specifically regarding:   

* if you can no longer eat, drink or breathe on your own;      

* if you cannot function independent of machines;

* if you are confined to bed;   if you have no cognitive ability.    

Without a living will and other documents, would your spouse, children
or parents know what you would want? Would they make the same decisions
you would if you haven’t put them in writing? Would they feel
comfortable sustaining your existence in a vegetative state or if you
could not communicate with them? Would they know if you would or would
not want to continue living if you were to lose major physical or
mental capacity? These are tough decisions to make under any
circumstances and especially tough under duress.

What is a Living Will?    

A living will is a statement of how an individual would like to be
treated in the event that he or she is unable to make decisions
regarding the use of life sustaining medical treatment. A living will
does not always order the withdrawal or withholding of life sustaining
measures for a severely ill person. A living will can ask for
continuous medical treatment regardless of an individual’s medical
condition. An individual may also assert that life-sustaining treatment
be withheld or withdrawn if certain conditions are present.

You can read the rest of the article, including information about the different state requirements, here.