AUGUST 2, 2010 VOLUME 17 NUMBER 24
Your doctor is busy. She is seeing dozens of patients every day, and their insurance plans force her to get those patients taken care of and out the door quickly. By default, she may limit her contact to the minimum necessary to diagnose and treat.
But you want more. You want to know what is really going on. You want to know how you can help, and whether you should be adjusting your diet or your habits. You want to understand the interrelationship of different medications, and the side effects of each. You want to hear about alternative treatments, what the doctor is looking for, what you can expect.
How are you going to get that information from your smart, helpful, friendly but very busy doctor? By talking with her, of course.
Easier said than done. In a perfect world you would have all the tools you need — well, actually, in a perfect world you wouldn’t need a doctor at all, but we’re some distance from either level of perfection. But maybe a new publication from the National Institute on Aging can help.
“Talking With Your Doctor: A Guide for Older People” is a practical pamphlet designed to give you some tips about how to communicate with your physician (or, for that matter, your physician’s assistant, nurse practitioner or other health professional). It comes complete with some worksheets and checklists to help you organize yourself for your initial or periodic doctor’s visit. Do you have your advance directives with you? Have you listed all the medications AND over-the-counter AND herbal remedies and supplements you take? Do you have your insurance card, the names and phone numbers of specialists or other doctors you see, your eyeglasses and hearing aids with you?
Some practical tips from the NIA publication:
“Consider bringing a family member or friend.” It might be easier to remember the important items on your list if you have organizational and moral support. A savvy assistant can help you remember what the doctor tells you, too.
Start by locating a doctor you can talk to. If you are uncomfortable about getting information from your current doctor, or unable to get her to understand how important it is to you to have a discussion rather than a lecture, consider changing doctors. Interview a prospective new doctor’s staff on the telephone — after all, they are the ones you will deal with most. Check your prospective doctor’s credentials and special training. Schedule a first meeting (you may have to pay for it if your insurance doesn’t cover it) and pay attention to how well the doctor works with you and how comfortable you feel about the exchange of information.
Share information about your habits, as well as your medical care and conditions. In order to understand what is going on with you, your doctor must know whether you smoke or drink, whether you engage in risky behaviors, how much you sleep each night, whether you have an active sex life. Be candid and forthcoming with your doctor; she will be better able to advise you if she knows what you are doing.
Perhaps you are helping care for (or are concerned about) an elderly family member or friend, or one with a disability. The NIA booklet can serve as a guide for you, as well. You can use the checklists and worksheets to collect and organize information, and to help you keep track of questions you need to address. The tips for communication with your doctor will work every bit as well when the patient is someone you are caring for, or care about.
You can order printed copies of “Talking With Your Doctor” for free. You can also download it online and print out only those portions you need — like the worksheets, for instance. It could help you get a better handle on your medical treatment, or the treatment of someone you care for or about.
Everyone should sign a living will and (perhaps more importantly) a health care power of attorney. You knew that already, right? But how should one go about preparing a living will?
The answer is deceptively simple. Forms are widely available online, from health care providers and from aging advocacy organizations (to name just a few places). One of the best in Arizona (because it is well-formatted and easy to get to) is offered by the Arizona Attorney General’s office. Those forms are generally fine, though obviously neither comprehensive nor customized. Your lawyer can (and probably will) prepare a more extensive and personalized document as part of your estate plan — your will and (if you create one) your living trust.
Be aware of state variations. Your state may refer to the health care power of attorney as a health care “proxy,” or call your agent a “patient advocate.” You will want to make sure any forms you use are appropriate for your state — that may not require the involvement of a lawyer, but your estate planning lawyer will be able to address the same questions while preparing your estate plan.
Most people will want to sign both a living will and a health care power of attorney, though the common practice in many states (including Arizona) is to incorporate both into a single document. Depending on your state there may even be other kinds of “advance directives” to consider — like a mental health power of attorney, or an authorization for autopsy, organ donation and/or cremation (Arizona permits all of those additional directives).
Your advance directives are most useful if they are highly personalized. Clear directions and full information will increase the likelihood that your wishes are carried out, and provide your family with both comfort and direction.
Professor Hegland’s two-part video is at once entertaining and useful. He suggests that you write out your thoughts on end-of-life care, and provide your loved ones with explanations along with your actual instructions. You can also address related issues — what you want your obituary to highlight, who should speak at your funeral services, and more.
There are a handful of useful video resources available online addressing living wills and advance directives. Oddly, few of them offer practical advice about writing or signing the documents themselves. Most are promotional pieces by attorneys or online legal forums, describing the meaning and perhaps the importance of the documents. Three notable exceptions you might look at if you like Prof. Hegland’s submission: (1) a touching description, complete with family interviews, of the care forced upon Robert Wendland and his family when he was critically injured without having signed an advance directive — in two parts, (2) the cute but not terribly informative class project of a student named Maha, performed with a CPR dummy, and (3) the Arizona Attorney General’s dramatization about life care planning, including living wills and advance directives (to play this video, go to the AG’s “life care planning” page and click on the video link under “Life Care Planning For Everyone”).
When you name someone as your health care agent, you literally entrust them with life-and-death decisions. When you are the agent the job can sometimes seem overwhelming.
Sometimes health care decisions must be made by someone who was not even designated in a power of attorney. A “surrogate” decision-maker (usually, but not always, the closest family member) is often empowered by state law to act when the patient has not made a specific choice. Few patients have had specific discussions with their agents about their health care wishes, and those who have not gotten around to signing advance directives are even less likely to have given any direction.
Although thousands upon thousands of people make health care decisions for someone else every year, there is little help or direction available for the agent or surrogate. Lawyers may be familiar with end-of-life care and decisions, but they seldom get involved — and may be an expensive way to facilitate decisions even if they are available.
We can offer some general advice and a pair of printed resources for those making health care decisions for someone else. First, a few suggestions:
Talk to the person who has named you as agent about his or her wishes. Sooner is better than later, but even a seriously ill, demented or incapacitated patient might be able to give some direction.
If you know you have been named as health care agent, ask for a copy of the power of attorney. It might include provisions that surprise you, or that you need clarified.
When you have to begin using the health care power of attorney, make sure you get all the information you need. Talk to doctors, nurses and caretakers. Explain why you need to have your questions answered, and insist that you get them answered.
If you do not fully understand the medical issues involved in a given procedure or test, tell the providers you need more information. Do not hesitate to get a second opinion when you are uncertain what you should be doing.
Remember that you are not applying your own standards to the decision, but those of the person for whom you are acting. This can be the most difficult part of handling a health care power of attorney or surrogacy. The law recognizes — and favors — what it calls “substituted judgment.” That means that you are expected to substitute the patient’s judgment for your own, not the other way around.
There are at least two good printed resources for a health care decision-maker to consult. Both are online and free. We regularly recommend these to our clients (and their families):
Hard Choices for Loving People, by former hospital chaplain Hank Dunn. You can read and print it online at no cost. You can also purchase one or more printed copies, in English or Spanish, for $6.00 each (or less — prices drop as you order them in bulk).
By most reports Terri Schiavo was a shy and quiet woman, and she might well have been distressed if she had anticipated that the process of her dying would become such a public spectacle. Much has been written about her, her family, her wishes, her condition, and the political and religious factions aligned on one side or the other. In fact, too much has been written already—but we are compelled to seek some greater meaning for the public in her very private tragedy.
Regardless of individual reactions to the long death of Terri Schiavo, there are practical lessons for consideration. First among those, of course, is the importance of executing medical directives while still able to do so.
Every adult, regardless of age, should designate an individual (and one or more alternates) to make medical decisions in the event of incapacity. Whether the document is called a health care power of attorney, a health proxy designation or something else, it is important to designate a surrogate. Do not put it off because you do not think you are at risk. Terri Schiavo was 27 when she collapsed suddenly. Nancy Beth Cruzan was 25 when an auto accident left her brain-injured and catapulted her case into national headlines in the mid-1980s. A decade earlier, 21-year-old Karen Ann Quinlan’s injuries from a night of mixing alcohol and valium first focused public attention on legal, ethical and moral issues surrounding the end of life.
In addition to nomination of a surrogate to make personal and medical decisions, most individuals should also sign a statement indicating their wishes. The unfortunately-named “living will” can express a wish not to be treated in some circumstances, or to receive full treatment in any event, or any other variation imaginable. Under Arizona law, any statement describing your wishes can qualify as a living will—write it, sign it and have it witnessed (usually by two people) and you have made a significant contribution to your own peace of mind.
Arizona law provides a form for health care powers of attorney and living wills, but permits other options. Lawyers usually prepare the documents in connection with general estate planning, but a lawyer is not required. Forms are available from hospitals, area agencies on aging, and advocacy groups. A number of perfectly acceptable variations can be found online, including those at the Arizona Attorney General’s website.
Another option: the National Right to Life’s “Will to Live” directs provision of medical care under nearly all circumstances. It also expresses the view that tube feedings are not medical care, and should be continued in most circumstances.
Arizona law also recognizes advance directives authorizing mental health treatment, and directing withholding of CPR and resuscitative efforts. Those forms are not as important for most people but can be essential in some cases. For more information about the options in Arizona (including both mental health powers and the “orange form” governing out-of-hospital resuscitation) check into our Question and Answer section on advance directives.
Whatever documents you do sign, it is also important to circulate them widely. Encourage discussion of your wishes while you are still able to participate and you will increase the likelihood that those wishes will be honored.
Many of our clients have a visceral reaction to the idea that they might be “kept alive by machines” after they are no longer able to make health care decisions for themselves. That is why they sign “advance directives” like health care powers of attorney and living wills. The whole point of such documents is to convey the patient’s wishes about the type of treatment to be provided—or withheld.
Doris Lee had signed an advance directive before she was admitted to Riverview Care Center. The Louisiana woman had been very specific about what care she wanted. Her advance directive said, in part: “Do not use a respirator. Do not use dialysis. Do not use feeding tube. Do not use CPR.”
Late one night, aides at Riverview found Ms. Lee unresponsive and decided they needed help to revive her. They called 911, and emergency medical technicians responded. They did exactly what they are trained to do—they began CPR (cardiopulmonary resuscitation), administered chest compressions, placed a breathing tube and even a tube to deliver fluids. When Ms. Lee’s daughter arrived and demanded that the treatment be stopped, Ms. Lee was allowed to die without further intervention.
Ms. Lee’s daughters sued the nursing home for violating the instructions contained in Ms. Lee’s advance directives. The nursing home sought dismissal of the lawsuit, arguing that the question first had to be submitted to a medical review panel by state law.
The Louisiana Court of Appeals disagreed and ordered that the case proceed to trial. Ms. Lee’s daughters were not claiming medical malpractice, ruled the Court, but breach of contract and a violation of the Nursing Home Residents Bill of Rights. Terry v. Red River Center Corporation, December 10, 2003.
The significance of Ms. Lee’s case is subtle, but important. If her daughters’ claim was really a malpractice action, it would be judged by comparing the nursing home’s behavior to the prevailing standard of care among similar facilities. It would also be subject to special state procedural rules (similar to those adopted in Arizona) designed to make it harder for patients to successfully sue for malpractice.
If, however, the claim is based on contract principles or the rights contained in the Nursing Home Residents Bill of Rights, the questions become much simpler. Did the facility have a duty to follow Ms. Lee’s instructions? Did they know what those instructions were? And, finally, did they fail to honor her advance directives? Those are the questions to be posed at trial.
One way to help assure that you will not receive unwanted medical care is to sign an advance medical directive. Every U.S. state now recognizes health care powers of attorney (sometimes called health care proxies) or living wills. Nearly all states recognize both types of documents. Often, however, the decision whether to initiate or continue life-sustaining medical treatment must be made for patients who have signed no documents at all.
Most states now permit family members to make some—or even all—health care decisions for patients who have not signed advance directives. Sometimes those powers are limited; in Arizona, for instance, family members do not have the inherent power to refuse or remove feeding tubes.
When patients have not signed any kind of advance directive, however, the likelihood increases that an unhappy result will occur. Take the case of Engracia Torregosa Garcia as an example.
Ms. Garcia experienced cardiac arrest in July of last year. Although she was resuscitated she had suffered irreversible brain damage, and she fell into a chronic vegetative state. Doctors agreed that there was no hope of recovery, but Ms. Garcia could be kept alive for months or years on a feeding tube.
Because there was no prospect for improvement Ms. Garcia was transferred to hospice. Her mother, brothers and sisters immediately objected to her care in hospice, though, because the feeding tube was removed. The case ended up in court in Tennessee, where Ms. Garcia was being treated.
Nearly four months after her accident the trial court ruled that Ms. Garcia’s feeding tube could not be removed. State law permits anyone to sign an advance directive authorizing withdrawal or withholding of a feeding tube. The judge reasoned, however, that the same law prohibits removal of a feeding tube from a patient who never got around to signing any directive.
In the course of the proceedings the court had appointed an attorney to represent Ms. Garcia, and her attorney and the hospice program both appealed. The Tennessee Court of Appeals reversed the trial judge’s holding, and authorized the removal of her feeding tube. The evidence was clear, ruled the Court of Appeals, that Ms. Garcia would not have wanted to be kept alive in her current condition; the Tennessee legislature did not have the power to compel her to accept treatment just because she had not signed a particular form in advance. Juan-Torregosa v. Garcia, May 7, 2002.
The result in Ms. Garcia’s case would probably strike most people as correct. As is often the case with stories reported in Elder Law Issues, however, that result was not reached without considerable expense and delay—which could have been avoided with proper planning.
Many patients approaching the end of life feel very strongly that they would not want to be kept alive by feeding tubes, artificial breathing machines or other devices. Signing appropriate advance directives helps, but there is no guarantee that they will be located, properly understood and followed in every case. Discussions with family members, caregivers and medical providers can dramatically increase the likelihood that the patient’s wishes will be carried out.
Consider, for example, the case of Delores Cameron. She had been married for over 40 years to James Cameron, but she had two sons from an earlier marriage. In 1995 she signed a living will, using the form provided by the Alabama Legislature. It directed that “artificially provided nutrition and hydration” should be withheld if she were ever in a persistent vegetative state.
In March of 2000, after a series of strokes, Ms. Cameron became completely unresponsive. She was cared for in an Alabama nursing home, and fed through a feeding tube. Mr. Cameron directed the nursing home to remove the feeding tube.
Ms. Cameron’s sons filed a lawsuit to prevent removal of their mother’s feeding tube. After five days of hearings lasting over two months, the judge ruled that Ms. Cameron’s wishes should be honored, and her sons appealed. They made two arguments that serve as a warning for other patients who execute living wills, durable powers of attorney or other advance directives.
First they argued that Ms. Cameron was not really in a persistent vegetative state. Although one physician testified that she was slightly responsive to some stimulation, two others insisted that she lacked “thought, sensation, purposeful action, social interaction and awareness of self and environment.”
The sons also insisted that it was impossible that their mother really understood the meaning and effect of her living will when she signed it. If she had realized that it would have meant withdrawal of a feeding tube, they argued, she would not have signed the pre-printed form. They did not provide specific evidence of her wishes, but doubted that she had intended to sign the living will.
The Alabama Supreme Court decided that Ms. Cameron’s wishes should be followed—but only if the evidence of those wishes was “clear and convincing.” The trial judge had not used that phrase, so the case was sent back for a further hearing. Knight v. Beverly Health Care, August 31, 2001.
Would it have helped for Ms. Cameron to discuss her wishes with her sons in advance? The financial and emotional cost of legal proceedings might have been avoided if family members had talked over the documents and their meaning before Ms. Cameron’s final illness.
The moral of Ms. Cameron’s story: It is not enough to just sign a directive—family members should be informed and wishes discussed in advance.
Twice before we have told the unfolding and tragic story of Robert Wendland. Fate and the California Supreme Court have now written the final two chapters in the saga.
You may recall that Robert Wendland was injured when his truck rolled over in 1993. Mr. Wendland had been drinking and despondent—at least part of his emotional state would later be attributed to the then-recent death of his father-in-law from a debilitating disease.
After his accident Mr. Wendland’s wife and brother testified that shortly before the accident he had expressed a wish not to suffer a slow, agonizing death like the one he had seen his father-in-law endure. If that was his wish, it was not to be granted.
Although Mr. Wendland was in a coma for a period of time after his accident, he recovered to the point that he could give some responses to questions posed to him by his caretakers. While his treating physician elicited yes/no responses to some simple questions, he gave no response at all to the most chilling of the inquiries: “Do you want to die?” The physician testified that he wasn’t sure that the other answers were really responsive, though they seemed to be consistent.
Mr. Wendland’s wife asked the California District Court for permission to remove the feeding tubes keeping him alive. His mother and sister objected. In an emotional opinion after hearing days of testimony, the judge declined to give her that power. (See the August 10, 1998, Elder Law Issues)
Mrs. Wendland appealed, and the California Court of Appeals sided with her. (See the March 6, 2000, Elder Law Issues) Mr. Wendland’s mother appealed that decision to the state’s Supreme Court.
Last week’s opinion from the California Supreme Court, though chronologically the final word, was really the penultimate chapter. Mr. Wendland died, feeding tube in place, just before the final court decision was announced. That decision reinstated the judgment of the trial court—in the absence of clear and convincing evidence of Mr. Wendland’s wishes, the Supreme Court held, Mrs. Wendland did not have the authority to direct removal of his feeding tube. Conservatorship of the Person of Wendland, August 9, 2001.
Mr. Wendland’s story has limited applicability for many reasons. It is a California court case only, and other state’s courts might reach a different result. More significantly, Mr. Wendland’s condition was unusual: he was not in a coma, not in a vegetative state, but still not able to communicate effectively.
Mr. Wendland lived eight years in personal limbo while courts tried to decide his fate. His death made the final decision both moot and ironic. Though we may never know Mr. Wendland’s true wishes the lesson from his personal and legal history is clear. Failure to sign a living will or other advance directive can, in the real world, lead to unwanted, expensive and ultimately ineffectual treatment.
Though once viewed as slightly out of the mainstream of American thought, the “right-to-die” movement has become widely accepted today. Few would argue with the notion that a competent patient has the right to refuse life-sustaining treatment, even when the medical community collectively believes that the treatment should continue. Just this week, Rochester, New York, resident Bill White ordered that his ventilator be disconnected after 32 years; though officials were initially uncertain how to respond, after a quick legal review Mr. White was permitted to make the decision for himself. He died last Friday.
Mr. White was mentally competent at the time he made his decision. A more difficult question arises where the patient is not currently competent, but left an advance directive (a living will, or a health care power of attorney). Interpreting the directive, and trying to determine what the patient would have wanted in the present circumstance, can present legal, ethical and emotional challenges.
More difficult still is the dilemma posed by the patient who never was competent to express his or her wishes. In the case of a patient who has been developmentally disabled since birth, for example, should the fact of that disability compel a decision to aggressively treat every illness? Is it ever permissible to disconnect life-sustaining treatment from the never-competent patient? If so, how should the decision be made?
These are the questions that faced officials in the case of Matthew Woods. The 54-year-old Kentucky resident had a tested IQ of 71, and had resided in state facilities since age 18. His parents were deceased, and his two closest relatives were a brother and sister; his brother was not closely involved in his care and his sister resided in a Kentucky nursing home.
Mr. Woods was asthmatic, and was on his way to treatment at the University of Kentucky when he suffered a cardiopulmonary arrest in April, 1995. He suffered irreversible brain damage, and was in a permanently unconscious state, residing in another hospital.
Mr. Woods had never been able to tell anyone how he would want to be treated, and family was not available to help make the decision. Did that mean that he must be kept alive as long as possible on a mechanical ventilator?
The Kentucky court considering that question decided that it was permissible to withdraw the ventilator support, and Mr. Woods’ court-appointed guardian ad litem appealed. Ironically, Mr. Woods died (of “natural causes”) while the appeal was pending, but the Kentucky Court of Appeals nonetheless rendered its decision, finding that a guardian has the power to withdraw life-sustaining treatment even in the absence of any indication of the ward/patient’s actual wishes. Woods v. Commonwealth, July 30, 1999. The opinion was later withdrawn when the Kentucky Supreme Court accepted jurisdiction of the appeal. (Editor’s Note: the Kentucky Supreme Court did not rule until August, 2004. See Elder Law Issues for September 13, 2004, for an update.)
Arizona courts would reach the same result. In fact, the Kentucky case relies heavily on the logic of the leading Arizona case on this question, that of Tucsonan Mildred Rasmussen. Ms. Rasmussen was not developmentally disabled, but had never given any indication of her wishes regarding treatment. When she later was diagnosed as being in a persistent vegetative state, her guardian was authorized to withdraw the artificial tube feedings that kept her alive. Just as in the case of Matthew Woods, the final irony was that Mildred Rasmussen died while courts were still considering her legal fate.
