Trigger: Making Your Wishes Known at the End of Life, By PAULINE W. CHEN, M.D., Published: April 15, 2010, New York Times, http://www.nytimes.com/2010/04/16/health/15chen.html
In America, April 16, 2010 has been declared on Health Care Decisions Day, “part of a national campaign to encourage Americans to complete their advance directives or living wills and document their desires regarding medical treatment at the end of life. “ [New York Times]
I am glad to hear that America is continually promoting awareness of the importance of the advance directives.
In 2006, I made a formal declaration of my wishes on how I am going to die. The other terms for this kind of document is “ advance directive” and “living will.” I have been regularly updating my advance directive almost every year. My last update was on April 1, 2010, during the Holy Week.
I have not have my living will notarized since 2006. I felt it is NOT necessary. I personally think, especially, in the context of my family environment, it is enough that my immediate and extended family members know that I have such a documented will and they know my wishes. I am glad this stance of mine has been reinforced in a statement in this article in New York Times, “You don’t need an attorney to get these documents done.”
Advance directives will be of great help to my family members, physicians, and also to myself in decision-making during my end-of-life stage.
Foremost, they will help me die with dignity and with shortest duration of agony. They will also keep my hospitalization and medical expenses to just a “necessary “minimum.
In the past and at present, I have seen quite a number of patients and relatives suffering, physically, emotionally, and financially, that could have been minimized if not avoided by the presence of advance directives and end-of-life counseling by physicians.
In the Philippines, I think we should also have a national campaign similar to that in the USA to encourage more Filipinos to make their advance directives or living wills. Awareness and advocacy campaigns should be conducted by both physicians and health care institutions regardless of specialty. The campaigns should not be delegated to the hospice specialists only.
Attached is my 2010 updated Advance Directive.
There are other versions or templates that one can use. The Internet is full of these templates.
Declaration or Advance Directive
I, Reynaldo O. Joson, residing at _____________________, being of sound mind, willfully and voluntarily make this Declaration:
(1) If the situation occurs that I am in a vegetative state or coma from an incurable disease process or injury (as determined by two physicians approved by my wife [__________________] or designated successor attorney-in-fact), I desire and direct that life-sustaining procedures and means be withheld or withdrawn, including assisted respiratory ventilation and/or artificially administered fluids or nutrition (intravenous, gastric, jejunal, or other tube feedings), and that I be permitted to die naturally.
(2) If I should develop severe mental impairment to the degree that I am totally unable to perform activities of daily living or at least to recognize and meaningfully communicate with my family and others (as determined by two physicians approved by my wife [_______________] or designated successor attorney-in-fact), I do not want intensive or prolonged hospitalizations, major surgery, artificially administered fluids or nutrition (intravenous, gastric jejunal, or other tube feedings), blood transfusions, or assisted ventilation.
(3) If the circumstance occurs that I am in a state of near-death, but a good possibility exists of recovery to a purposeful situation (such as my being able to write or otherwise communicate helpful thoughts and information to my family and others), then I do not restrict my physicians from exercising their skills with prudence, wisdom, and restraint.
However, I do not desire extreme measures such as a heart transplant or the implantation of an artificial heart (other than the use of a temporary bypass pump during surgery). And, if the state of near-death is part of a terminal cancer or other progressively incurable disease process or injury, then I desire that measures be directed at comfort, rather than to delay the moment of death.
(4) Furthermore, if I am in a vegetative state or coma from an incurable disease process or injury, or in a state of near-death with a progressively incurable disease or injury, or if I have developed severe mental impairment to the degree that I am totally unable to perform activities of daily living or at least to recognize and meaningfully communicate with my family and others (as determined by two physicians approved by my wife [_____________] or designated successor attorney-in-fact), and if my heart or lungs cease to function, I do not want to be brought back to life with medications or with electrical or mechanical resuscitation or ventilation, or even with ordinary cardiopulmonary resuscitation.
(5) In any of these circumstances, it is my desire to be made comfortable with medications that are used to control pain, knowing that such medications may unintentionally hasten death. However, medications should not be used with the intention of causing death.
(6) It is my desire that the costs of my terminal care be kept to a minimum. Therefore, unless there are compelling reasons to the contrary, I would prefer to spend my last days at home rather than in a hospital or other expensive medical facility – unless being at home would be an unreasonable burden on my family.
I am legally competent to make this Declaration, and I understand its full import.
Witness my hand, this 1st day of April, 2010.
UNDER THE PENALTIES OF PERJURY, we state that this Declaration was signed by ____________________________________________ in the presence of the undersigned, who at his request, in his presence, and in the presence of each other, have hereunto signed our names and witnessed this ___________day of ______________________, 19_______, and DECLARE:
The Declarant is personally known to me, and I believe the Declarant to be of sound mind. I did not sign the Declarant’s signature to this Declaration. Based upon information and belief, I am not related to the Declarant by blood or marriage, a creditor of the Declarant, entitled to any portion of the estate of the Declarant under any existing testamentary instrument of the Declarant, financially or otherwise responsible for the Declarant’s medical care, or an employee of any such person or institution.
Making Your Wishes Known at the End of Life, By PAULINE W. CHEN, M.D., Published: April 15, 2010, The New York Times, http://www.nytimes.com/2010/04/16/health/15chen.html
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Tomorrow is Health Care Decisions Day, part of a national campaign to encourage Americans to complete their advance directives or living wills and document their desires regarding medical treatment at the end of life.
I will spend the day thinking about my father-in-law and how the wishes outlined in his advance directives continue to affect our family a month after his death.
My father-in-law was a lifelong educator, a gentle Latin scholar and former school head. That he also possessed cinematic-grade good looks seemed irrelevant to him. Instead, his greatest delights were, in descending order, his family and friends, word games and reeling off a good story, the quality of which could be judged by the wryness of the final one-liner. Even as he suffered from dementia, my father-in-law retained his ability to deliver the unexpected zinger.
Earlier this year at his skilled nursing facility, after joining one of two teams involved in a spelling bee, a staff member asked him what he wanted to name his team. He looked up at his elderly, slightly glassy-eyed comrades, then surveyed his opponents.
“The Winners,” he answered, with a slight smile. “Our name is ‘The Winners.’ ”
But there were no witty quips that morning four weeks ago when he woke up with a cold left arm. Later, in the hospital, surgeons would tell us that he had a clot in the arm’s main artery, as well as multiple clots in other arteries. With these pathways for oxygenated blood obstructed, my father-in-law’s arm, part of his spleen and a small segment of intestine were dying. Without multiple surgical interventions, the dying organs would soon release a torrent of toxins into his bloodstream. The tingling, numbness and slight discomfort he was complaining about would eventually give way to excruciating pain.
Even with my experience of having cared for patients in similar situations, I wanted at first to believe, against all odds, that my father-in-law’s course might be different. It seemed easier that morning to take the responsibility of deciding to do something, to proceed with an operation, than it was deciding not to intervene.
But was it right to count on the small chance that he might survive such an operation, when in fact it was more likely that our interventions would leave him languishing in an intensive care unit and returning over and over again to the operating room?
As it turned out, none of his family had to brood over the decision for long. In his gentle, understated way, my father-in-law had lifted the burden of that choice from his family’s shoulders years earlier. In the folder of papers that he carried with him to the hospital were the advance directives that spelled out how he wanted to live and that recapitulated conversations he had had with his children years ago about the inevitable end of his life.
My father-in-law completed those documents with the hope but not the assurance that they would actually influence the end of his life. In fact, not even experts in end-of-life care could have assured him or predicted whether his living will would have made any difference. While advance directives have been around for almost 40 years and have been federally mandated in all Medicare-certified institutions for two decades, there has been no research to show that patients with living wills actually end up dying in a way that is consistent with their wishes.
Researchers at the University of Michigan in Ann Arbor combed through the records of over 4,000 individuals over age 60 and found that almost a third of these patients would eventually become too incapacitated to make the necessary decisions regarding medical treatment at the end of life. But among them, nearly all of those with a living will requesting limited or comfort care only ultimately did receive such care at the end of their lives. And those patients who specified all care possible were far more likely to receive aggressive care than those who did not request it.
“We need to take the initiative to document decisions seriously,” said Dr. Maria J. Silveira, lead author of the study and an assistant professor of internal medicine at the University of Michigan. “Every person who comes through the door at age 60 or above has a significant chance of losing decisional capacity.”
The number of individuals with living wills has increased steadily over the years; still, fewer than half of the patients in the study had one. Without such documents, patients remain vulnerable even if they have already had end-of-life care conversations with a physician. “We live in a time where care is very fragmented,” Dr. Silveira said. “You can’t be sure that the doctor who has the conversation with the patient is the same doctor who will care for the patient in the hospital or in the nursing home.”
These conversations will likely become less frequent as time pressures mount for physicians. “The most important thing when you are discussing these preferences is a relationship of trust,” Dr. Silveira noted. “You cannot develop that in five minutes or in one visit.” While reimbursing physicians would help encourage such end-of-life care discussions, efforts last fall to legislate such reimbursements failed. Now, with 40 million new patients in the health care system and shrinking numbers of primary care physicians, such patient-doctor conversations may become nearly impossible.
One solution, suggests Dr. Silveira, is to use Web sites that help patients create living wills. Two she recommends are Caring Connections and Aging With Dignity, for patients; and for doctors, Endlink, from Northwestern University, and EPERC, from the Medical College of Wisconsin.
“You don’t need an attorney to get these documents done,” Dr. Silveira said. Physicians themselves can also work around the time issue by asking their patients to designate a health care proxy, a trusted friend or relative who can make decisions when that patient can’t. “Proxies can have as much of an effect on hospitalization and care as living wills, and naming one takes less than two minutes,” Dr. Silveira observed. “It is a far less difficult and emotional discussion to ask for a name than it is to talk about advanced directives.”
Added Dr. Silveira: “The goal is to assure patients that their autonomy is respected, as much as it is to alleviate family and loved ones of the burden of making a decision they’ll regret or wonder about forever.”
I was with my father-in-law on the last day of his life. He sat in bed, face so luminous that the sunlight seemed to reflect off of his cheeks. It was hard for me to take my eyes off of him that morning because he looked not like the man I had always known but the man I had only seen in pictures. He looked as he had in the full bloom of his youth — gentle, beautiful and eyes shining with hope.
Later that day I understood why. My father-in-law was at home, he was surrounded by family and he was dying as he had wished.
He, one of “The Winners,” had won.