Living Wills and Health Care Directives – Are They Really Necessary? (A Personal Story)

SurrogateDecisionBlog1I lost my grandmother, Elsie M. Cooper, to colon cancer on April 28, 2010 at 9:25 p.m.  For those who knew her, it was common knowledge that at 90 years of age, she had been a long time pillar of good health and energy.  She had always been committed to a good diet and yes, regular exercise.  As a result she required no doctor visits or medications of any kind.  She lived independently in a three story row house and continued to drive and engage in a variety of volunteer activities.  She was truly amazing and despite having very clear ideas about what she wanted (during and after death), she refused to prepare, among other things, a living will or health care directive.  This was true, despite having a very close relationship with her “grandbaby, who’s my little lawyer” as she used to introduce me.  She also refused to prepare a Will, but that will be the subject of a future blog.

The first sign of her illness, came on The King Holiday, just prior to her death and following a couple days of unexplained vomiting and diarrhea.  Because she never displayed even the slightest signs of a common cold, I took her to my local emergency center.  There an x-ray showed a blockage.  After being transferred to Doctor’s Hospital, we learned of the cancerous growth on her colon and the need for immediate surgery.  As stated, she had no living will, no health care directive and no power of attorney. It was at this time that I heard her say “My granddaughter will be making all of my medical decisions.”  As my kids would say:  “Huh, What?!”  As long as I had known her, no one had made decisions for her, but just like that, I was assigned the role of medical decision maker.  On with my doctor’s coat!

In any event, as we prepared for the next day’s surgery, she was now willing to provide written instructions.  That night, I drafted a power of attorney, in order to handle her financial and household affairs while she was being treated.  The next morning, we found a notary in the hospital and the document was properly executed.  With respect to her health care, the hospital noted her wishes that I make the decisions, in her chart and off to surgery she went.

The doctors were amazed, noting that she had the internal body of a 65 year old woman and expressed that the surgery had gone very well.  Things were looking bright.  While I took a great sigh of relief, I thought to myself:  “All she needs to do now is recuperate.  That’s no problem.  When she is released, she can recover at my house and then return to hers”.  Of course, things didn’t go that way at all.

Over time and day by day she suffered from a variety of infections, which always required some level of medical decision and of course, a return trip to the hospital.  Luckily, the hospital records were clear and my role as the medical decision maker remained honored.  As her health declined, managing my family, my law practice and her health became more and more of a challenge.  Leaving only time in the day to literally react, as best I could, as things happened and situations swiftly changed.  It seemed that decisions needed to be made every day.  Some were urgent and some were not.  Some came during work hours, some during home hours and some during the midnight hours.   Decisions regarding medication management, getting her to eat, engaging in the necessary physical therapy, obtaining regular medical supplies and a wheelchair, managing the scheduling of visiting health care professionals and on and on.  Needless to say, it was a very stressful time.  Although I had made every decision during this process, when she learned that she would need a second surgery, she plainly said “No, I’ve lived a long and wonderful life and I’m ready to go home”.  With that said, during her final admittance to the hospital, her health quickly declined and she became unable to verbally communicate. With a 30 day life expectancy, she was transferred to a hospice facility.

Although, she was now unable to speak, we were very close and on most occasions, I still knew what she wanted, such as:  what she may or may not have wanted to eat or drink, when she was uncomfortable and wanted to shift positions, when she wanted to be left alone and the like.  But there was a problem.  Upon arrival at the hospice facility, the staff did not know me or her wishes.  Further, she had no living will or health care directive and was unable to verbalize (or write down) her wish that I continue to make her medical decisions.  While I had the Power of Attorney to handle her financial affairs, I had no document that would allow me to make medical decisions.

How was it that I did not prepare that living will, after we returned home, the first time?  Well, while I may be a lawyer, just like the rest of you, I’m human too.  She had told the hospital what she wanted and they respected that.  Initially, I believed that things were going fine and I honestly believed that she would recover.  Thereafter, my life had been suddenly turned upside down and I was struggling to make it day to day, physically, emotionally, professionally, spiritually and mentally.  I was drained and exhausted and frankly, in the midst of it all, it simply did not occur to me that we would end up in that position.  So what was the solution to not having either a living will or health care directive?

Few are aware that all is not lost without these documents.  Potentially more of a struggle, but not lost!  In Maryland (and I’m sure other States), there is the ability to become a surrogate medical decision maker.  The law can be found in Maryland Health-General Article §5-605.  This section lays out who can and how to become a surrogate decision maker, how the decisions must be made, communication requirements and decision making limitations.  The actual code section follows this article.      

While the notion of becoming a surrogate medical decision maker was ultimately a great alternative, it was difficult weeding my way through the layers of medical staff who were unfamiliar with or unwilling to believe in this section of the law.  It turned into another exhaustive effort during an already stressful time.  Until I finally reached administration, I literally felt like a Who in Whoville.  No one would listen!  After finding someone who would listen, I then had to meet all of the requirements of the Maryland code (listed below) and, among other things, obtain written consents from the other classes of persons who were either closer or on the same bloodline level as me (her children and other grandchildren), and be sure and take note where granddaughters are on the list?  Granddaughters are listed 6th and referred to as “friend or other relative”!  How disruptive and upsetting it was, during the immediate time of her transfer, to then have to contact other family members in Georgia, New York and Haiti, in order to get consents signed and faxed back, BEFORE anyone would listen to me, her only local relative.  Oh, and did I mention the consent that I also needed from my cousin, who was incarcerated in West Virginia….Ugh!!

While you don’t have to have a living will and/or health care directive, clearly, the best course of action is preparation.  Life comes unexpectedly and the best of us can be taken aback at any time.  So learn from me and be prepared.  If you don’t have a living will or health care directive, get one.  If you can see yourself having to take care of a loved one down the road, make sure they have a living will and health care directive.  Trust me, it will be more valuable than you know when that time comes.   If it’s already too late to draft these documents, start working on obtaining the status of surrogate medical decision maker as soon as possible.  In any event, preparation is the key!

Grandma1Grandma, You’re still helping me help others.  I love you always and miss you deeply.   Your grandbaby, ShaRon.  May you continue to rest in peace! (February 12, 1919 – April 28, 2010)

Thanks for reading. Please note that I am licensed to practice law in Maryland and the District of Columbia.  Please feel free to learn more about my practice at www.kelseylaw.net and to seek legal advice when you feel it necessary.

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Maryland Health General §5-605:

    The following individuals or groups, in the specified order of priority, may make decisions about health care for a person who has been certified to be incapable of making an informed decision and who has not appointed a health care agent in accordance with this subtitle. Individuals in a particular class may be consulted to make a decision only if all individuals in the next higher class are unavailable:  (i) A guardian for the patient, if one has been appointed; (ii) The patient’s spouse; (iii) An adult child of the patient; (iv) A parent of the patient; (v) An adult brother or sister of the patient; or (vi) A friend or other relative of the patient who meets the requirements of paragraph (3) of this subsection.  

      (3)    A friend or other relative may make decisions about health care for a patient under paragraph (2) of this subsection if the person:(i) Is a competent individual; and (ii) Presents an affidavit to the attending physician stating: 1. That the person is a relative or close friend of the patient; and  2. Specific facts and circumstances demonstrating that the person has maintained regular contact with the patient sufficient to be familiar with the patient’s activities, health, and personal beliefs.  (4) The attending physician shall include the affidavit presented under paragraph (3) of this subsection in the patient’s medical record.

      (b)(1)  If persons with equal decision making priority under subsection (a) of this section disagree about a health care decision, and a person who is incapable of making an informed decision is receiving care in a hospital or related institution, the attending physician or an individual specified in subsection (a) of this section shall refer the case to the institution’s patient care advisory committee, and may act in accordance with the recommendation of the committee or transfer the patient in accordance with the provisions of § 5-613 of this subtitle. A physician who acts in accordance with the recommendation of the committee is not subject to liability for any claim based on lack of consent or authorization for the action.

            (2)      If a person who is incapable of making an informed decision is not in a hospital or related institution, a physician may not withhold or withdraw life-sustaining procedures if there is not agreement among all the persons in the same class.

      (c)(1)      Any person authorized to make health care decisions for another under this section shall base those decisions on the wishes of the patient and, if the wishes of the patient are unknown or unclear, on the patient’s best interest.

            (2) In determining the wishes of the patient, a surrogate shall consider the patient’s  (i) Current diagnosis and prognosis with and without the treatment at issue; (ii) Expressed preferences regarding the provision of, or the withholding or withdrawal of, the specific treatment at issue or of similar treatments;  (iii)  Relevant religious and moral beliefs and personal values; (iv)  Behavior, attitudes, and past conduct with respect to the treatment at issue and medical treatment generally; (v)  Reactions to the provision of, or the withholding or withdrawal of, a similar treatment for another individual; and (vi) Expressed concerns about the effect on the family or intimate friends of the patient if a treatment were provided, withheld, or withdrawn.

            (3)      The decision of a surrogate regarding whether life-sustaining procedures should be provided, withheld, or withdrawn shall not be based, in whole or in part, on either a patient’s preexisting, long-term mental or physical disability, or a patient’s economic disadvantage.

            (4)      A surrogate shall inform the patient, to the extent possible, of the proposed procedure and the fact that someone else is authorized to make a decision regarding that procedure.

      (d)      A surrogate may not authorize:(1) Sterilization; or (2) Treatment for a mental disorder.

 



Categories: Advance Directive, health care directive, Living Wills, Powers of Attorney, Surrogate Decision Maker

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