Wednesday, March 14, 2007

My Mom's wishes

In the story below, there is an important sentence: We discussed possible actions with Dr. X and decided to halt all invasive treatments, a course that my family has long agreed to.

I know from personal experience what this simple bit of family planning can mean for the terminally ill patient and for his or her relatives. My Mom's living will had this directive, among others:

That no extraordinary measures be used to prolong my life if in the sole judgment of my daughter and my physician such measures will not restore me to a level of life that is commensurate with the mental and, to a lesser degree, physical standards by which I have been fortunate enough to live. Without limitation, such extraordinary measures include cardiac and/or pulmonary resuscitation, mechanical respiration, tube (intravenous and/or nesogastric) feeding and antibiotics.

She wrote and signed this in the early 1990's, when she was in her early 70's and therefore likely well before it would be likely to be applied. The application of her directive occurred two years ago after an accident left her with a severe head injury and internal bleeding in her brain. When it became clear that, in her words, "the application of life-sustaining procedures would serve only to artificially prolong the moment of my death", my sisters and I were empowered to have a short and decisive conversation to remove the respirator and other measures that were keeping her alive. With no regrets on our part, she died just a few hours later.

Afterwards, the ICU nurse kindly reaffirmed our decision, saying to me: "You, of all people, know that we can keep people alive forever. You did the right thing. She would have spent the rest of her life on her back in a nursing home, unable to talk or move. Surely, she would not have wanted that."

A living will with this kind of advance directive is one of the greatest gifts a parent can give to his or her children. If you don't have one, or your parents don't, please have one prepared and discuss it with your relative while you are both still able to do so.


Anonymous said...

Paul, I'm confused. Do I need a health care proxy or a living will or both.

Anonymous said...

I think it is both, but maybe a lawyer out there can comment.

Anonymous said...

Great post - this is something everyone should do. A Health care proxy is so important as well. Both living will and health care proxy are the best to ensure the wishes of the patient.

Thanks for sharing this story.

Anonymous said...

A health care proxy is a legal document that allows you to name a person(s) to make health care dicisions for you in the event you are not able to do so. This takes effect only after your physician has determined that you lack the capacity to make health care decisions.

A living will is a legal document prepared where an individual can outline specifics in regards to their wishes- i.e.not prolonging life in certain situations, no feeding tubes, etc.

Massachusetts is one of the few states that recognizes a health care proxy as the basis for health care decisions and NOT a living will.

So here in MA it is important that in addition to appointing your health care proxy, you make sure that your proxy is aware of your wishes in regards to advanced directives. This can be through conversation or through devising a written living will in addition to signing a health care proxy form.

Paul- thank you so much for bringing this issue to light on your blog. In geriatrics we see so many families in distress and disagreement about courses of action, because the conversation was not had early enough with their loved ones about what their wishes would be.

Anonymous said...

Great post. I think it would also be helpful if primary care doctors, as a matter of standard practice, addressed end of life wishes with their middle aged and older patients early in the relationship. Find out what the patient wants and doesn't want in an end of life situation, get it in writing, and make it part of the patient's medical record. Perhaps this could even become one of the metrics that payers define as part of good primary care.

Daniel Sullivan said...

Just to clarify about living wills in MA, it is correct that they are not legally binding. However, it would be unusual (and incorrect in my view) for a physician not to consider & respect treatment preferences outlined in a living will.

It is a very good idea to have a health care proxy. But it's essential for people to discuss with their proxy what they would and would not want in terms of care for the end of their life, or for a situation where the chances of recovery are slim. As a doctor, it is distressing when there is a proxy, but he/she can't answer the question "what would the patient tell us he/she would want if he/she was able?"

It's important to fill out a form (available at - put "health care proxy" in the search box), but you really need to have a conversation with your proxy so he/she can understand & accurately represent your wishes if needed.

Christine G. said...

Paul, I think between you and Blog, MD I have found my two favorite new blogs of 2007.

My husband works in a nursing home. he sees families every day demanding that he g-tube a 98 year old dying alzheimers patient (he's a speech pathologist/swallowing specialist).

it breaks his heart every day.

we both have made our intentions very clear.

thank you for sharing the professional and personal experience that you do... it is greatly appreciated.

Toni Brayer, MD said...

You are a rare CEO to have this blog and your topics are relevent and provacative. I have linked my EverythingHealth blog site to yours. Keep blogging, Mr. Paul.

Anonymous said...

I have just found your wonderful blog. Don't always agree with you but the dialogue is interesting. In reading through a number of posts at one sitting--including ones about hospital acquired infections, apology and medical malpractice, I wondered how BIDMC handles situations in which one of your patients dies from a HAI? Do you apologize? Do you hold your breath and hope the hospital isn't sued? Do you tell the family these kinds of deaths just happen? How are you thinking about the intersections of these issues?

Anonymous said...

Thank you for the information. I guess I'll dig out my living will and get a proxy as well. I thought I read that Massachusetts recognized one more than the other.

Anonymous said...

Its not enough to just name someone as your proxy or to be named a proxy. It is important for both parties to completely understand what is expected should the need for the proxy to make decisions arise. The whole idea of the proxy and living will is that an individual is essentially making the decisions about what steps should or shouldn't be taken to care for them if they became unable to make the decisions. It takes quite a burden off the shoulders of loved ones who are thrust into a position of making important decisions and wondering what the patient would want. And in many cases, it pits family members against one another because some are looking to make one decision and others the exact opposite. And in some of those cases, the decisions aren't being made in the patients best interests but the interests of decision makers.
My parents have both a health care proxy and living will and they have explained to us on many occassions what their expectations are. When my father was recently diagnosed with stage four lung cancer (see Paul's previous entry on the blog) and treatment was failing we were prepared to follow his wishes. We were fortunate enough that he was of sound mind when the decision was made to move to palliative care. He was the one that made the final decision. We followed his directions when he was unable to make the decisions on his own.

Anonymous said...

If you want a good example of why a health care proxy and living will are improtant then look at the Schiavo case. Would she have wanted to be kept alive in any way possible with the hope fo some day coming out of the coma as her parents stated or would she have preferred to be removed from all live support systems and allowed to die as her husband stated. No one knows. Many see the husband as a sleeze who after waiting for so many years for her to come out of it moved on with his life, but that doesn't mean what he said was not true. We don't know her true wishes and never will. Don't put your family in that position.

Anonymous said...

Paul, I too have had the honor of fulfilling my Mom's Advance Directive, and she died a month ago. To me, acts like yours and your sisters are the most respectful thing we can do for our loved ones. I'm also aware that even knowing that doesn't lessen the loss. My condolances on this anniversary of your Mom's passing.

Anonymous said...

wow i was impressed. Thank you so much for sharing your story it is people like you that make the world a better place. Take care and god bless.