Advance Directive

Part I: Advance Directive

In the event that I have been determined to be incapacitated to provide informed consent for medical treatment and surgical and diagnostic procedures, I wish to designate as my surrogate for health care decisions:

I fully understand that this designation will permit my designee to make health care decisions and to provide, withhold, or withdraw consent on my behalf; to apply for public benefits to defray the cost of health care; and to authorize my admission to or transfer from a health care facility, including a mental health facility.

I expect my surrogate to make decisions that are in accordance with my wishes, expressed both orally and in written form, that reflect my values and treatment preferences. In all cases my surrogate should make decisions consistent with the kind of health care choices I have made in the past and conversations we have had about those choices. All choices made about my care should be weighed carefully: the quality of life and benefits of any treatment must outweigh the burdens, risks, and lack of quality of life. For the purposes of this document, “quality of life” will be defined as the follows: the ability to derive some enjoyment from friends, family, and acquaintances; freedom from long-term (six months or more), chronic, untreatable, extreme pain; and the presence of cognition. All decisions must be made in the spirit of this document as one meant to preserve my quality of life and not as legal maneuvering using specific language to justify a particular action.

I willfully and voluntarily make known my desire that my dying not be artificially prolonged under the circumstances set forth below, and I do hereby declare that if at any time I am incapacitated and I have a terminal condition, an end-stage condition, or I am in a persistent vegetative state, and if my attending physician and at least two other consulting doctors have determined that there is no reasonable medical probability of my recovery, I direct that life-prolonging procedures be withheld or withdrawn when the application of such procedures would serve only to prolong artificially the process of dying, and that I be permitted to die naturally with only the administration of medication or the performance of any medical procedure deemed necessary to provide me with comfort care or to alleviate pain.

The exception to the above is comfort care. If I am incapacitated but conscious, and I have a terminal condition or an end-stage condition, I want to be kept as comfortable and free of pain as possible, even if such care prolongs my dying or shortens my life.

It is my intention that this declaration be honored by my family and physician as the final expression of my legal right to refuse medical or surgical treatment and to accept the consequences for such refusal. My failure to designate a health care surrogate shall not invalidate this declaration.

I hereby make this anatomical gift, if medically acceptable, to take effect on death. I give any needed organs, tissues, or eyes for the purpose of transplantation, therapy, medical research, or education. I also give my body for anatomical study, with the understanding my remains will be returned to my family for cremation and distribution of my ashes.

I understand the full impact of this declaration, and I am emotionally and mentally competent to make this declaration. I further affirm that this designation is not being made as a condition of treatment or admission to a health care facility.

Part II: Analysis and Reflection

I chose my sister as my surrogate, because she meets all the criteria and qualifications listed by the ABA, both objective and subjective. I did not select an alternate surrogate at this time; if something happened to my sister, of course I would have to redraft the directive. Although there are many who care about me, the qualification that separates my sister is, “would be able to act on your wishes and separate his or her feelings from yours” (ABA, 2005). I feel this is the most important qualification listed in the ABA survey. The ability to set aside emotional responses and act in the person’s best interest, even if those decisions are painful for other members of the family or friends, is not a quality everyone possesses. Going through the rest of the ABA pamphlet, I found there were some questions I had definitive answers for, others that I felt less sure about, and others that didn’t matter much to me, but would probably be important to my family. Sorting through these was valuable, because it informs what I felt was important to put in my Advance Directive, and what I was willing to leave up to family and friends. For example, I feel strongly about the necessity of organ and tissue donation, so I included language to that effect in my Advance Directive. I also have a strong wish to be cremated, as I find burial to be costly and burial plots take up space that, in my opinion, is better left to the living. For the questions about the memorial service (for example, how I want to be remembered and what songs I would want played), I found that I would prefer to leave that up to my family and friends, as they would be the ones planning and attending any memorial service. I also appreciated the conversation starters provided in the packet, along with ways to overcome resistance. The multiple worksheets were also practical and useful. While I don’t think I could get my family to sit down and play “Go Wish,” I think I could get them to fill out the packet provided by the ABA. Overall, this collection of documents is so comprehensive and wide-ranging, I feel that filling it out in its entirety—even if not everything in the packet goes into the advance directive—would create an invaluable resource for those making end-of-life decisions for an individual.

As far as creating the Advance Directive itself, the links on the National Healthcare Decisions Day website were helpful, especially this state-specific guides. I didn’t realize there was so much variance from state to state. For example, in South Dakota, if you want to opt out of life-sustaining nutrition, you have to specifically state that in your Advance Directive, as proxies are not allowed to make that decision (National Healthcare Decisions Day, 2012). In several states, being pregnant either severely impacts or entirely voids your entire Advance Directive (National Healthcare Decisions Day, 2012). Despite the fact that both are popular places for retirees and therefore have higher-than-average aging populations, Arizona and Florida have very different Advance Directives. Arizona has no additional provisions, whereas Florida has several conditions that must be met in the language of one’s Advance Directive to authorize certain kinds of care, including specific language that must be included in the case of pregnancy (National Healthcare Decisions Day, 2012). I am glad to know about this difference, for any future moves I or loved ones might make in the future, but I am surprised there is so much variation between the states, and so little said in the national conversation on aging about these differences.

In crafting my Advance Directive, I used the template provided by the National Hospice and Palliative Care Organization (n.d.), because I found it to be clearly written and encompassing of all the legal issues. Knowing Florida’s particular requirements, I added in language about the ability of my surrogate to make mental health decisions for me, including voluntary admission to a mental facility. I also added some other language defining quality of life, as I see it, because I think the overall purpose of an Advance Directive is to preserve quality of life, and yet a definition of this was lacking, most likely because it is highly subjective and personal.

I made my Advance Directive applicable in cases of terminal illness, end-stage, and persistent vegetative states, as these are all cases which are medically hopeless; however, I increased the number of doctors to three, mostly with regards to the vegetative state clause. Two doctors did not feel like enough; I would prefer doctors from different specialties and with multiple perspectives. There is an old saying, “To a man with a hammer, everything looks like a nail.” While I value experience, I would want a fresh perspective as well, preferably from someone who does not see this kind of case every day. Also, after reviewing other sample Advance Directives, I included a rider for comfort care, even if it prolongs my dying or shortens my life. I hope it would not prolong my dying excessively, but the idea of living with daily, excruciating pain is untenable to me. I do not want to suffer.

While working on this Advance Directive, I was thinking about a friend’s uncle who recently died of an aggressive, untreatable form of colon cancer. He had about a year between diagnosis and his death and was able to fill out an Advance Directive and do end-of-life planning. When healthy, this man was an outdoorsman who loved cook-outs and going to the gym. Over the course of his illness, he slowly lost everything he enjoyed, everything that made his life worth living. Although he attempted multiple rounds of chemotherapy, the cancer had mottled his organs, and eventually he was unable to eat, and had to be fed through a feeding tube. After a few months of living like this, he decided that this was not the way he wanted to live, and although it was a difficult decision within his family, he made the choice to quit taking the nutrition. Although anticipating a transition to hospice care as his body slowly shut down, instead he passed away peacefully and quickly, just one day after he ceased TPR treatment. He had opposed hospice care, not wanting strangers in the house, even while recognizing the necessity of it; his wife, a devout Christian, believes that God “told him it was time to go.” Having the ability to make end-of-life decisions allowed him to take some of the power back that cancer had taken away from him. It also made an incredibly difficult situation for his wife slightly easier, because she knew that all the decisions she was making were in accordance with his wishes. End-of-life conversations are difficult to have, but they are necessary; the one form of insurance you’re guaranteed to need.

References

ABA Commission on Law and Aging. (2005). Consumer’s Tool Kit for Health Care Advance Planning, (2nd ed.) Washington, DC: American Bar Association.

Healthcare Decisions Day. (2012). National Healthcare Decisions Day. Your Decisions Matter. Retrieved from http://www.nhdd.org/state-specific-resources/

National Hospice and Palliative Care Organization. (n.d.). Find a Hospice. Caring Connections. Retrieved from http://www.caringinfo.org.