Living wills and health care proxies
November 1, 2005 | 12:00am
Would it have made a difference if Terri Schiavo had had a living will? Maybe not. If family members are litigious, no legal document is going to keep them from going to court. And when her case became a political and television spectacle, it spun into that separate, twitchy, media-charged reality that bears little semblance to ordinary human affairs.
But thankfully – mercifully – most families don’t end up so angry with one another. Nor does Congress usually get involved. Furthermore, most of us are blessed: We’ll die, after a long life, of a condition that will give us time to prepare – if not for death, at least for dying. The living will and the related health care proxy are important parts of these preparations.
"Advance directive" is an umbrella term that covers living wills and health care proxies. The terms are easily confused because living wills are sometimes referred to as medical directives. But they have different, if overlapping, purposes.
A living will is supposed to spell out in advance what kind of care you want when you’re no longer able to decide for yourself. Appointment of a health care proxy – which also goes by different names, including durable power of attorney for health care and health care agent – involves designating someone to make medical care decisions for you.
The living will and health care proxy should dovetail. Whomever you pick as your proxy is supposed to use "substituted judgment" about what you’d want. The term comes from English common law, and it means what people would have wanted if they could competently decide for themselves. The more thorough and thoughtful your living will, the more accurate your proxy’s substituted judgment is likely to be.
Putting your wishes in writing is crucial. The very act of writing helps most people think through difficult issues and make distinctions that might be glossed over in conversation. Ideally, you should both write out a living will and go over it with the person you’ve designated as your proxy so that the person has a clear understanding of your wishes.
Putting them in writing is also important for legal reasons. Courts may require that there should be "clear and convincing" evidence of the person’s wishes. Most of the time, a written document is more likely to satisfy such requirement than remembered conversations.
But writing out your wishes also has pitfalls. Phrases like "heroic measures" are vague, slightly dated, and just not that helpful. On the other hand, without medical expertise – even with it – it’s hard to know what you’ll want. Get too specific, and the living will becomes inflexible and may be ignored. Besides, no amount of detail will cover every situation. Medical decisions occur in a web of contingencies. Alter one fact, challenge one assumption, tinker with one definition – and the entire situation changes.
Another problem is that living wills are more easily written and followed when the person has an illness with a fairly slow and predictable course, such as some cancers. By contrast, life-threatening conditions like advanced heart failure or chronic obstructive pulmonary disease (COPD) are often episodic and quite unpredictable. Patients have close calls that may require hospitalization, but after some intervention, they have fairly long periods of stable, if not robust, health. The less certain the prognosis, the harder it is to judge an intervention. Will this get the person through a difficult phase of the illness and leave some time with a good quality of life? Or will it merely draw out dying?
Most experts, however, say that living wills are most effective when they focus on priorities and goals, and not so much on how to achieve them. For some patients, avoiding pain is uppermost. Others may want to live as long as possible. One helpful approach is to think about your care in terms of scenarios, which can bring together the right combination of goals and ways to achieve them
In the United States, state laws vary as regards living will statutes. Usually, you must have two witnesses to the document for it to be legally binding. In some states, the health care proxy and living will ("health care instructions") are combined in one form. In others, the state statute only covers health care proxies, so there’s no set procedure or requirements for living wills.
But even in those states or countries without statutes or laws, experts still recommend that you should have some type of living will or statement about your wishes. For even if it’s not legally binding, it will help your family and doctors make decisions about the care you would want.
Most people pick a spouse, partner, or child as their health care proxy. Obviously, you want someone who knows you and your preferences well. At the same time, some emotional distance is helpful. If the proxy is too attached to the patient, he/she may have difficulty in allowing life-prolonging intervention to stop.
Some place restrictions on the decisions that proxies can make. For example, a proxy may not be able to make decisions about withdrawing artificial nutrition unless the patient explicitly authorizes it. This is all the more reason to write your wishes.
To avoid conflicts, it is recommended that you should have only one proxy, though provisions for alternates are common. If you don’t name a proxy and can’t make your own medical decisions, most states in the US have laws for selecting someone by default. Terri Schiavo didn’t have an advance directive, so under Florida Law, her husband Michael Schiavo became her default surrogate.
Most states prohibit you from picking your doctor as your proxy. Wisely, to avoid conflicts of interest, some also extend the prohibition to employees of the hospital or other health care facilities.
Some experts in this field see an inherent tension between the living will and the health care proxy. A living will is an expression of what you want done, albeit in advance. Health care proxies turn over decision-making authority to others, although they are supposed to adhere to the patient’s wishes. An interesting study of this issue was published about 13 years ago in the Journal of the American Medical Association.
A group of about 150 mentally competent dialysis patients were asked whether they would want dialysis continued if they developed advanced Alzheimer’s disease and how much leeway they would give doctors and their proxies to override that directive – "if it was in their best interest." Nearly half (42 percent) of them said they would grant their doctors and proxies "a lot" or "complete" leeway to override the directive. The researchers concluded that following advance directives (that’s the term they used, not living wills) may not truly reflect the patient’s preferences.
Dr. Muriel Gillick of the Harvard Medical School, who has written extensively about end-of-life care issues, wrote an opinion piece last year for the New England Journal of Medicine about advance directives. She compared them to other forms of preventive medicine: Underutilized even though they are cheap, low-tech, and potentially highly effective.
It’s odd that anything to do with dying could be viewed as preventive medicine, but that is a brilliant way of putting it. Because for all of their flaws, internal inconsistencies, and legal hassles, the living will and health care proxy are like eating a good diet, getting exercise, and all of those other things we do to take care of ourselves. We do them because we want to avoid unwanted medical treatment and in the hope of living life to the fullest until it is no more.
It’s also important not to get too caught up in legalities. The fact is that in most cases, families, doctors, and nurses, arrive at the right and humane decision about end-of-life care using common sense and compassion as guides. Written documents aren’t needed. They’re the exception, not the rule.
But by having a living will and designating a health care proxy, we narrow the chances of having a death we wouldn’t want and may spare our loved ones the heartaches when it’s time to make the difficult decisions.
If you need more information or legal assistance on living wills and health care proxies, you may consult Atty. Sandra Marie Coronel of the Yorac Arroyo Chua and Coronel Law Firm at 633-5981.
But thankfully – mercifully – most families don’t end up so angry with one another. Nor does Congress usually get involved. Furthermore, most of us are blessed: We’ll die, after a long life, of a condition that will give us time to prepare – if not for death, at least for dying. The living will and the related health care proxy are important parts of these preparations.
A living will is supposed to spell out in advance what kind of care you want when you’re no longer able to decide for yourself. Appointment of a health care proxy – which also goes by different names, including durable power of attorney for health care and health care agent – involves designating someone to make medical care decisions for you.
The living will and health care proxy should dovetail. Whomever you pick as your proxy is supposed to use "substituted judgment" about what you’d want. The term comes from English common law, and it means what people would have wanted if they could competently decide for themselves. The more thorough and thoughtful your living will, the more accurate your proxy’s substituted judgment is likely to be.
Putting them in writing is also important for legal reasons. Courts may require that there should be "clear and convincing" evidence of the person’s wishes. Most of the time, a written document is more likely to satisfy such requirement than remembered conversations.
But writing out your wishes also has pitfalls. Phrases like "heroic measures" are vague, slightly dated, and just not that helpful. On the other hand, without medical expertise – even with it – it’s hard to know what you’ll want. Get too specific, and the living will becomes inflexible and may be ignored. Besides, no amount of detail will cover every situation. Medical decisions occur in a web of contingencies. Alter one fact, challenge one assumption, tinker with one definition – and the entire situation changes.
Another problem is that living wills are more easily written and followed when the person has an illness with a fairly slow and predictable course, such as some cancers. By contrast, life-threatening conditions like advanced heart failure or chronic obstructive pulmonary disease (COPD) are often episodic and quite unpredictable. Patients have close calls that may require hospitalization, but after some intervention, they have fairly long periods of stable, if not robust, health. The less certain the prognosis, the harder it is to judge an intervention. Will this get the person through a difficult phase of the illness and leave some time with a good quality of life? Or will it merely draw out dying?
Most experts, however, say that living wills are most effective when they focus on priorities and goals, and not so much on how to achieve them. For some patients, avoiding pain is uppermost. Others may want to live as long as possible. One helpful approach is to think about your care in terms of scenarios, which can bring together the right combination of goals and ways to achieve them
But even in those states or countries without statutes or laws, experts still recommend that you should have some type of living will or statement about your wishes. For even if it’s not legally binding, it will help your family and doctors make decisions about the care you would want.
Some place restrictions on the decisions that proxies can make. For example, a proxy may not be able to make decisions about withdrawing artificial nutrition unless the patient explicitly authorizes it. This is all the more reason to write your wishes.
To avoid conflicts, it is recommended that you should have only one proxy, though provisions for alternates are common. If you don’t name a proxy and can’t make your own medical decisions, most states in the US have laws for selecting someone by default. Terri Schiavo didn’t have an advance directive, so under Florida Law, her husband Michael Schiavo became her default surrogate.
Most states prohibit you from picking your doctor as your proxy. Wisely, to avoid conflicts of interest, some also extend the prohibition to employees of the hospital or other health care facilities.
Some experts in this field see an inherent tension between the living will and the health care proxy. A living will is an expression of what you want done, albeit in advance. Health care proxies turn over decision-making authority to others, although they are supposed to adhere to the patient’s wishes. An interesting study of this issue was published about 13 years ago in the Journal of the American Medical Association.
A group of about 150 mentally competent dialysis patients were asked whether they would want dialysis continued if they developed advanced Alzheimer’s disease and how much leeway they would give doctors and their proxies to override that directive – "if it was in their best interest." Nearly half (42 percent) of them said they would grant their doctors and proxies "a lot" or "complete" leeway to override the directive. The researchers concluded that following advance directives (that’s the term they used, not living wills) may not truly reflect the patient’s preferences.
It’s odd that anything to do with dying could be viewed as preventive medicine, but that is a brilliant way of putting it. Because for all of their flaws, internal inconsistencies, and legal hassles, the living will and health care proxy are like eating a good diet, getting exercise, and all of those other things we do to take care of ourselves. We do them because we want to avoid unwanted medical treatment and in the hope of living life to the fullest until it is no more.
It’s also important not to get too caught up in legalities. The fact is that in most cases, families, doctors, and nurses, arrive at the right and humane decision about end-of-life care using common sense and compassion as guides. Written documents aren’t needed. They’re the exception, not the rule.
But by having a living will and designating a health care proxy, we narrow the chances of having a death we wouldn’t want and may spare our loved ones the heartaches when it’s time to make the difficult decisions.
BrandSpace Articles
<
>
