If Terry Schiavo had a health care proxy or any other form of advance health care directive, we never would have heard of her.
If any good can come out of the media circus surrounding Schiavo's life and death, it is that her case has brought the issue of health care proxies, living wills and advance directives to the forefront of debate, according to a number medical and probate law experts.
Mark W. Williamson of Sterling, former chair of the Probate Law Section, said he has seen an increase in requests for advance directives from people in their 30s, "a somewhat younger, married demographic where people usually are not thinking about end of life care at that age."
"I have had people calling who wouldn't even have thought about estate planning," Williamson said. "I'm hearing that from lots of estate planning attorneys. People do see how bad things can get. If any good came out of the Terry Schiavo case, that would be it. The vast majority of people don't have estate planning and they have become concerned with the process to avoid being 'Schiavo'd'."
Williamson, who at age 21 had to withdraw life support from his 23-year-old brother, admits he has become very opinionated as to how advance directives should be documented.
"People should definitely have health care proxies with living will provisions indicating their wishes as far as healthcare," said Williamson.
"The Schiavo case is not at all uncommon. It is more the rule than the exception that family members will be split as far as terminating health care," he said. "Advance directives help ameliorate the adverse family relationships if there has been an unequivocal demonstration of what the person's preferences would be. They take a whole level of discourse out of the situation."
Perhaps the rising level of interest in end-of-life issues spurred on by the Schiavo case will prompt more individuals to prepare advance directives.
D. Rigney Cunningham, executive director, Hospice & Palliative Care Federation of Massachusetts, said that the week before Schiavo's feeding tube was removed the HPCF Web site had 60,000 hits. The week the tube was removed, HPCF reported 240,000 hits to its pages that involved advanced care planning, a 400 percent increase.
The Massachusetts Medical Society had similar Web traffic increases for its advance directive documents.
MMS Communications Director Frank Fortin said that an average day before the Schiavo case would be 15 to 25 hits a day for advance directive documents. During the two weeks when the case dominated the news media, the site averaged between 1,000 and 1,700 hits a day.
"Traffic was driven solely by increase in advance directives," said Fortin. "Everything else was at normal levels. The last time we had this big of a jump in Web traffic was after Sept. 11, with concern about smallpox and anthrax. This gives you insight into how important this issue became to the general public. An indication of the intensity of interest is that people spent more time browsing the entire MMS Web site and all advance directives. People made an effort to get themselves educated very quickly."
| 'Ten Things You Should Know' |
In their book, Choosing Your Path: How Massachusetts Residents Can Take Control of Their Medical Care, Estate Plans, and Funeral Arrangements, attorneys and brothers Mark Bernardin and Peter E. Bernardin give a list of 10 tips to making advance directives as effective as possible.
The following is the list of "Ten Things You Should Know," which was excerpted with permission from Choosing Your Path: How Massachusetts Residents Can Take Control of Their Medical Care, Estate Plans, and Funeral Arrangements by Mark J. Bernardin and Peter E. Bernardin.
"1. Executing a Living Will is not enough. Although Living Wills are useful documents, they are not statutorily recognized in Massachusetts, and doctors and hospitals are not required to adhere to the wishes expressed in your Living Will. You need to execute a Health Care Proxy that names an agent who will enforce your wishes.
2. In addition to identifying the Principal (you) and your Agent, the Proxy must state that you intend to grant to your Agent the authority to make health care decisions on your behalf; describe any limitations you wish to place on your Agent; and indicate that your agent's authority becomes effective only if you subsequently lose the capacity to make medical decisions. (Also, it is wise to include the addresses and telephone numbers of your agent and alternate, so that they can be located quickly.)
3. Your Proxy must be signed by you or at your direction in the presence of two adult witnesses. The witnesses must then sign and affirm that you appear to be at least eighteen, of sound mind, and under no constraint or undue influence. (It's a good idea to follow these rules if you execute a separate Living Will.)
4. The witnesses cannot be named as an Agent or Alternate Agent. And an operator, administrator, or employee of a medical facility where you are, or may be a resident or patient, cannot be your agent, unless she is also related to you by blood, marriage, or adoption.
5. Do not hide your Proxy and Living Will in a safe. Execute five or six originals, one for your primary care physician (with oral and written instructions to place the documents in your medical records), one for your medical records at the hospital where you are likely to end up in an emergency, one for your Agent and one for your Alternate, one for your own records, and a copy for your lawyer's safe.
6. If you spend a lot of time in another state (winters in Florida, for example,) you should consult an attorney in the second state to ensure that your Proxy will also be recognized there.
7. If your agent is your spouse, and you become divorced or are legally separated, your entire Health Care Proxy is revoked. In other words, your Alternate Agent cannot step in and take the place of your spouse. In this case - or if you revoke your Proxy orally or by drafting a substitute - you should collect your old documents, destroy them, and distribute your new Proxy.
8. Select your Agent and Alternate carefully. Make sure they understand your wishes and are willing to do all they can to ensure they are honored. Communication is vital.
9. Express your wishes as clearly as possible in your Proxy and Living Will. Clarity and brevity will help your Agent, family and doctor understand your wishes.
10. Communicate, communicate, and communicate.
a. Talk to your family about the wishes you have expressed in your Proxy and Living Will and tell them who you have selected as your Agent and Alternate. Surprise, hard feelings, or controversy around your hospital bed may create an unpleasant situation and could result in your wishes not being honored.
b. Talk to your doctor about your Proxy and Living Will. Make sure she, and the facility at which she enjoys staff privileges, are willing to honor your wishes."
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Understanding the law
Becoming educated is not free from hurdles.
"So how should we draft proxies and living wills to maximize their effectiveness? How much detail should we include? Should we combine the two documents? If you offer these three questions to ten lawyers, you may get thirty different answers," say attorneys and brothers Mark Bernardin and Peter E. Bernardin, co-authors of Choosing Your Path: How Massachusetts Residents Can Take Control of Their Medical Care, Estate Plans, and Funeral Arrangements.
Probate Law Section Council Chair Fred Nagle of Haverhill agrees.
"Now we have 50 different states dealing with the issue not 50 ways, but 450 ways," Nagle said. "Florida has three different (advance directive) statutes that it takes a lawyer to get through to figure out. There is no hierarchy and none trumps the other in Florida statutes. You could have one of each."
"Massachusetts has done good job of codifying to the extent it needed to with health care proxies and durable powers of attorney and in dealing with other issues by common law method," said Nagle.
Mark Bernardin points out that the Massachusetts health care proxy statute lists four required elements that need to be in the proxy document: name the principal and agent; indicate that the principal intends the agent have the authority to make the heath care decisions; describe any limitations placed on the agent; and indicate the agent's authority becomes effective if the principal subsequently loses capacity to make health care decisions.
"It doesn't say you can't put other things in," he added.
According to Choosing Your Path, although Massachusetts statutory law does not recognize living wills, they are still an important planning tool for Massachusetts residents because state courts have shown a willingness to rely on them when attempting to resolve disputes regarding the medical wishes of incompetent persons.
Peter Bernardin, a past Probate Law Section Council chair, said there is no prohibition against writing a health care proxy and a living will as one document, but warns that it can get unwieldy.
"The health care proxy is a simple document in concept but granting that authority doesn't provide the health care agent with any guidance for what the person would want," he said. "I use the analogy that the health care proxy is like handing someone the keys to your car: the living will tells them where to go."
He added, "I don't like to combine the health care proxy and the living will into one document because hospitals get nervous. Most health care proxies follow the statute; they have no extra wording about end-of-life planning. I use a separate document because if a hospital looks at health care proxy language they're not comfortable with, they could say 'I don't recognize this language' or question whether this language is binding in Massachusetts."
"With a couple of simple documents, the durable power of attorney, the health care proxy and a living will, you can pretty much guarantee you won't have to go through guardianship proceeding and, more important, can make sure your wishes are carried out," said Peter Bernardin.
But Nagle said there is "no need for living will in Massachusetts if you have a well-drawn health care proxy."
Nagle's approach is to craft a health care proxy. But "when I do a durable power of attorney, I include heath care language in it. It will typically say that 'if the person named in health care proxy refuses to act, then….' So I create a second document but make it clear the health care proxy will control."
Nagle tells clients the reason they want a separate document for health care rather than just a durable power of attorney is because many times you don't want items contained in a durable power in the public record.
"For example, a specific piece of real estate may be listed in the durable power," Nagle said. "If you are using that document in a health care proxy situation, others can get information about real estate that you own. That's why you would prefer to have a separate health care document."
Ability to react to changing
circumstances
Williamson suggests health care proxies be drafted to give as broad powers as possible to the health care agent so he or she can react to changing circumstances. He also recommends being careful who is chosen, making sure that person's judgment is trusted.
Williamson also points out other collateral yet vital issues when considering advance directives, such as health insurance coverage.
"Very few people these days are fully insured," Williamson said. "If there is any lapse of coverage at all, they will run through the life savings of the patient in no time. It's difficult to put these questions into economic terms and some would be offended by that. But I have to think that many people leave surviving spouses who can be completely impoverished by end of life care that no one wanted and is by definition ineffectual."
When considering health care directives, Williamson suggests looking at other needs at the same time. "Everyone should have a durable power of attorney, which allows someone else to act on your behalf from a financial point of view; it is very difficult to deal with someone's assets if they're incapacitated," he said. "Most people labor under the misapprehension that husbands and wives can act for each other in case of incapacity. That is generally not the case in Massachusetts."
"If you need a health care proxy, you damn well need a durable power of attorney and a will," said Williamson. "A lot of the conventional wisdom is dead wrong, so take the opportunity to talk to an attorney about in what areas you are exposed. Get an integrated estate plan.
"Whether you should be unplugged is not the only issue, should you become incapacitated."
Added Cunningham, "Many people think advance directives are for older people. But the most dramatic cases have been younger people: Cruzan, Schiavo, the firefighter from Easton. Young people can live a long time with life support even though they may not have any quality of life."