Some of the most important decisions to make are also those which happen to flummox many seriously ill people and their families: the questions surrounding the issues of living wills and power of attorneys.
The question: "What makes sense?" blends together with "What is the right thing to do?" and "What would Mom have wanted?"
The answer? All too often, the answer is: "I just don't know what to do. I don't feel like I have the knowledge tools to even begin to answer all the questions they're asking me. None of it seems to make sense."
In doctors' offices, in treatment facilities, in hospital waiting rooms, and around dining room tables, it is not uncommon to hear the following refrain: "What about that 'Living Will' and 'Power of Attorney' stuff my doctor keeps asking me about?" Or: "Behind all those complicated terms, what does it all mean?"
The following pages will attempt to answer a few of those questions, and to begin to sort out what makes sense in terms of medical decision-making.
Of the two, the Durable Power of Attorney for Health Care is, by far, the best document for insuring your future health care decisions are honored.
"Durable Power of Attorney" simply means that you choose someone you know and trust to make health care decisions for you when you are unable to make them for yourself. For many people, this is a trusted spouse, son or daughter, a niece or nephew, or close friend, with whom you can discuss some of the following issues to help guide them. See: Medical Decision Making, Questions to answer. (You can obtain a Durable Power of Attorney form at most physicians' offices. You may wish to have a lawyer draft a document for you, specifying who you would like to be your 'attorney in fact,' and then have the signing witnessed by a Notary Public. A notary can be found at most banks.)
Many families worry about how to begin a discussion about medical decisions, living wills, and durable power of attorneys.
When a loved one has a serious illness, but is receiving treatment, it can feel 'too early' to broach the discussion of: "What if?" Even when a loved one's physical or mental deterioration is obvious, it can still feel uncomfortable or awkward to begin an end-of-life decision making discussion.
But having this discussion is vital for every family - and having the discussion early on is better than waiting until the last moment. This can be an opportunity for one's wishes to be respected and followed, and to help people live fully and die naturally, well-cared for, and with real dignity.
Whether you are at the initial phases of a serious illness from which you are expected to make a full recovery, in the middling phase of some serious illness such as cancer, heart disease, lung disease, or kidney disease, or in the end-stages of a life-threatening illness, your physician, hospital, and doctors office will tell you that you need to fill out an Advance Directive.
The Living Will usually has a whole series of questions that are supposed to guide family and health care professionals as to 'what you would want,' if you are, for some reason, unable to make your own decisions.
Forms include a plethora of questions, such as: "If I am unconscious, and not expected to recover, I would, or would not want to be provided with artificial nutrition and hydration." Or "If I am unconscious and not expected to recover, I would, or would not, want CPR."
The truth is that very few of us will ever be able to anticipate with even minimal accuracy how we MIGHT feel in a certain unforeseen future medical or social situation, and what treatment we MIGHT or MIGHT NOT want in such an unforeseen circumstance. Right now, hale and healthy, we might say: "If I were ever sick, I would not want to be hospitalized - or have CPR if my heart stops, or have food and water given to me."
"Do Not Resuscitate" is a medical order that means that should your heart stop, you will not be given CPR, or cardio-pulmonary resuscitation. The words sound complicated, though the meaning is not. Being a 'DNR' means that when your heart stops, you DO NOT receive 'mouth to mouth' resuscitation and chest compressions - and you DO NOT wish to be put on a respirator or breathing machine to breath. Being a 'Full Code' means you want all of the above, all of the possible medical life-saving bells and whistles. And being a 'Partial Code' means something in between.
Are you confused yet?
If so, that's not surprising. Because the modern world of medical decision-making is very, very confusing.
And, though most of us are lay people, with limited medical knowledge, we are routinely asked to participate in making complex medical decisions.
If you are ill, your physician will likely ask you if you, or your loved one, would like to be a 'Full Code' and be fully resuscitated, or not. The answer to these questions, like many others we've considered in this section, depends on the particular circumstances of the medical situation.
If you have a terminal disease, and/or are quite elderly or ill, it may not be best for you to have 'Full Resuscitation.' This is because, when a person dies naturally of a terminal disease or is quite elderly, CPR is very minimally successful. Most of the time, it doesn't make sense to get a person's heart and lungs re-started and 'bring a person back from the dead,' when we can not cure the primary underlying terminal disease. Also, if a person is elderly and has fragile bones, (or the cancer has spread to the bones), it can not only be futile to do CPR, but it can be painful to survive.
But what if I were only temporarily disabled by injury or illness? And what if, given time and rehabilitation, it might be possible for me to recover most, if not all of my previous abilities? What if my doctor, spouse, or loved ones were hamstrung in decision-making by an out-of-date document I'd executed some years before? Wouldn't it be better for a spouse or family member whom I love, and who loves me, to confer with my doctor and other family members, in order to then make the correct decision for the correct circumstance?
Maybe in the future, I would indeed wish to have such treatment - to have more time with family or loved ones - to love them and be loved by them. Or, in the future, when I have a serious or life threatening illness, and my condition had become terminal, perhaps I would say:
"Do all things natural. Care for me - give me food and water as long as my body is able to process it. Provide me with warmth, shelter, love, and companionship. By all means, do not do anything that would cause me to die before my time. But when my time is up - when my body is dying naturally, please let me go. Know that I love you, hold my hand, stay with me, but when the time comes for me to join the Lord, please donít hold me back. Let me go..."
In other words, particular decisions are best made within the context of a particular illness or situation, not in some sort of hypothetical: 'If this happens to me, then I want this.' 'Or if that happens, I want that.' (Though discussing your thoughts on different sorts of scenarios with those who will be responsible for making your health care decisions for you, is most definitely a good idea.)
One cannot say, for instance: "Aunt Mabel would certainly be better off dead - and I would be better off on vacation rather than caring for her for the next few days until she dies naturally. So let's just take away her oxygen and give her an overdose of pain medication she doesnít need now - to hasten her on her way, and me on mine." (This situation, unfortunately, is not hypothetical. The name has been changed for privacy purposes, but a niece with a Power of Attorney did in fact say and do the above several years ago in a Seattle-area hospital.)
Good intentions are not enough.
As theologian and philosopher Bernard Lonergan once wrote, "All the good intentions imaginable are compatible with all the blunders conceivable." (Though one is left inevitably wondering whether the vacation-seeking niece in the above story in fact had anything other than her own selfish interests at heart. In this circumstance, it may have been more apropos to say: "All the bad intentions in the world are compatible with all the even more horrific blunders conceivable.")
Bernard Lonergan's statement applies to health care, among other things. The above story about the unfortunate aunt illustrates how important it is to anchor decision-making in morality - and how necessary it is to choose a health care proxy with the combination of good judgment and a solid moral framework. The best person may be someone related to you, or it might be a good friend or trusted confidant.
So, move forward with discussion about your advance directive and durable power of attorney for health care, but do so armed with aforementioned knowledge, and a guiding moral framework. 'Do no harm.' Which brings us to the first moral principle in end-of-life decision making:
Allowing death to occur naturally is very different than intending to cause death to occur unnaturally. Thus, if a person is in the end-stages of a terminal disease, and has uncontrolled pain, it is absolutely permissible to control the pain, even if the unintended side-effect is to shorten the life of the dying person. This humane pain control, using only necessary means to assure comfort, is far different from the above scenario with the unfortunate aunt and the mercurial niece, in which the intent was to expedite death.
However, if a person is not dying of an underlying pathology, then Consoling Grace considers food and water, warmth and shelter to be a natural and humane means of providing comfort - not extraordinary means, and certainly not burdensome treatment.
Because some spiritual traditions differ in this regard, it might be wise to refer to your own faith denominations guidelines. The United States Catholic Conference web site is an excellent resource. (Please refer to End-of-Life Articles and Resources: A Catholic Guide to End-of-Life Decisions.) Local and statewide Catholic Conferences also have some excellent information on the subject. Protestant, Jewish, and other faith communities have additional clarifying guidelines to help discern moral decisions in the midst of particular medical circumstances.
In terms of the moral use nutrition and hydration - or the moral withdrawal of nutrition and hydration, that too, is dependant upon the particular circumstances. If a person is dying of a terminal disease, and is unable to process food and water, (no matter how it is delivered, by mouth or via intravenous or tube feeding) then there is no moral or medical obligation to provide such nutrition or hydration.
The truth is, that at some point in the active dying process, almost every person stops being able to take in food and water. When a personís body can no longer process nutrition and hydration. and the heart, lungs, and/or kidneys are closing down, it is no longer necessary to provide nutrition and hydration. In fact, at times, providing nutrition and hydration to an actively dying person can increase discomfort, cause difficulty breathing, and even hasten death.
A natural death is just that, natural. For many, many centuries, people have died in community, cared for by family members or fellow villagers. Unfortunately, the considerable advances in medical technology of the last 50 years have not been accompanied by considerable advances in medical or social common sense. And heaven knows, medical advances have not been in lockstep with moral advances.
So it was, that for many years, in the 1950's, 60's, and 70's, the medical philosophy in the United States seemed to be: "If we can use the technology, then we should use it. And we should try to postpone death, by hooking everyone up to as many tubes and machines as possible, for as long as possible, thereby rendering them the opposite of a natural dignified death."
Fortunately, with the advent of the modern hospice movement, and the teachings of Elizabeth Kubler Ross and others, the balance of end-of-life care has begun to shift back to the communities. And some semblance of common sense in terms of competent and dignified end-of-life care has returned. (As always, it is essential to be careful that the pendulum has not swung too far to the 'I feel like I am a burden, so I have an obligation to get out of the way and die or be killed.') In sum, allowing 'nature to take its course' is usually morally permissible. Obviously, direct and indirect killing is not.
Created by Consoling Grace, (c) 2006 Eileen T. Geller