Who takes care of the unbefriended elderly?

A critical part of the estate planning process involves the client’s selection of an appropriate person to look out for the client when it’s time for end-of-life decision-making, so that this person can be named in the Health Care Proxy and given access to medical records via a HIPAA Release.. This endeavor seems simple enough, except when there is no one in the client’s life who the client feels may be able or willing to step forward. Perhaps the client’s children have moved far away and are unavailable in an emergency. Perhaps the client is estranged from family and does not want to involve them or friends in the most intimate of decisions. Or perhaps the client simply has outlived her family and friends and there is no one available to look out for her.

Clients like these are known in the elder care world as the “unbefriended elderly.” Roughly 10 years ago, the American Bar Association estimated that 4% of seniors fell into this category. I think that number is now significantly higher, as the size of the typical family has continued to shrink and longevity continues to increase. A terrific article on the New York Times web site discusses the problems which occur for these folks in identifying advocates for end-of-life care.

Under Massachusetts law, employees of hospitals, nursing homes, rest homes, and other “facilities” licensed by the Departments of Public Health, Mental Health and Developmental Disabilities may not act as health care agents unless those employees are actually related to the elder. Thus, doctors, nurses and other employees who may actually have the most intimate knowledge of the elder’s wishes and medical needs are generally barred from acting as a health care agent under a health care proxy. If such persons cannot serve, where does that leave the elder?

Some elder law attorneys will act as health care agents and advocates. I (and most of the elder law attorneys I know) am uncomfortable taking on such a role for my clients for several reasons. First, my training is in law, not social work or medicine, and I do not feel that I have the skills to take on such a task, particularly for persons who I do not know well. Second, my malpractice insurance coverage likely does not extend to making decisions which are clearly medical and not legal in nature. Third, I really cannot promise that I will be available at the drop of a hat to fly to the hospital at the expense of other clients who have the right to expect that I will be diligent in performing work for them. In short, I don’t think it’s fair to my clients or myself that I take on such a role for people to whom I’m not closely related or who are not very close friends. It’s certainly not a role I would wish to assume unless I have known the client for a very long time.

When these situations arise in my practice, I strongly recommend the involvement of a willing geriatric care manager (GCM). These professionals are generally nurses or social workers by training. They have experience navigating medical systems, and physicians are going to be more comfortable speaking with a GCM about medical issues than to a lawyer. A GCM will also cost much less than an attorney to perform such tasks with a level of skill that a lawyer simply will not have. Not all GCMs are comfortable taking on such a responsibility, however.

But what about the situation where the unbefriended elder lacks the funds to hire a GCM? This is a situation which frequently occurs in nursing homes, where the elder’s funds have long been exhausted. As the article notes, there are some non-profits which will step up and have their GCMs or social workers serve, but identifying such organizations is not easy. If there is no health care proxy, then a guardianship may be required if the elder is no longer competent. Since Massachusetts does not have a public guardianship commission, the unbefriended elder will be assigned the next attorney or volunteer on the judge’s list of (usually) uncompensated guardians. This situation is, in my opinion, entirely unsatisfactory.

So… what to do? If you are an unbefriended elder, talk to a geriatric care manager about whether she would be willing to act as your health care agent, and don’t hesitate to ask whether she would continue to act in this role if you run out of funds. Have an elder law attorney draft a health care proxy which makes it clear that the health care agent has the power to authorize or not authorize types of treatment. Make sure you speak with your GCM regularly so that she can get to know you, your values, and your medical needs. But whatever you choose to do, pick your health care agent while you have the ability to find someone who will take care of you.

Well, the scare tactics work in the short term (updated!).

The same folks who rammed the Schiavo legislation through in 2005 have tanked the proposal to have Medicare pay for a voluntary conversation about end-of-life options, now claiming that government shouldn’t be involved in end-of-life decision making. Chuck Grassley, the ranking member of the Senate Finance Committee said yesterday

“I think the best thing to do is if you want people to think about the end of life, number one, Jesus Christ is the place to start, and after that, in the physical life, as opposed to your eternal life, it ought to be done within the family and considered a religious and ethical issue and not something that politicians deal with,” he said.

This afternoon, the Senate Finance Committee has announced that Medicare funding to discuss advance directives will not be included in any package. However, the sharp-eyed Amy Sullivan notes at Time’s Swampland blog that

Remember the 2003 Medicare prescription drug bill, the one that passed with the votes of 204 GOP House members and 42 GOP Senators? Anyone want to guess what it provided funding for? Did you say counseling for end-of-life issues and care? Ding ding ding!!

Let’s go to the bill text, shall we? “The covered services are: evaluating the beneficiary’s need for pain and symptom management, including the individual’s need for hospice care; counseling the beneficiary with respect to end-of-life issues and care options, and advising the beneficiary regarding advanced care planning.” The only difference between the 2003 provision and the infamous Section 1233 that threatens the very future and moral sanctity of the Republic is that the first applied only to terminally ill patients. Section 1233 would expand funding so that people could voluntarily receive counseling before they become terminally ill.

And guess who voted for this measure? Yup — Senator Grassley.

Setting aside my feelings about this truly magnificent degree of hypocrisy for the moment, I will try to look on the bright side — seldom in my fifteen years of practice have I heard so much conversation at the national level about living wills, health care proxies and advanced directives. If the shouting encourages more people to contact attorneys to make sure that they have legally appropriate documents in place, perhaps something good will come out of it. I hope some people have learned that if they don’t have advance directives and a health care proxy in place, the default position for doctors is to do everything to keep someone alive, no matter what. And perhaps if the issue has become so politically toxic that it must be removed, some good things will be enacted into law.

Maybe this issue will be revisited in the next legislative session, when the flame-throwing has died down.

When the truth doesn’t serve your goals, scare them to death.

Section 1233 of the House health care reform bill provides Medicare funding so doctors can be paid for a voluntary conversation with elders, who can be given “an explanation by the practitioner of the continuum of end-of-life services and supports available, including palliative care and hospice, and benefits for such services and supports that are available under this title.”

Now, you may not agree with the health care reform bills. You may not even agree that it’s needed or desirable. But are the national Republicans and their pals in talk radio so intellectually and morally bankrupt that they’ve resorting to this reprehensible garbage in an effort to kill health care reform?

But on right-leaning radio programs, religious e-mail lists and Internet blogs, the proposal has been described as “guiding you in how to die,” “an ORDER from the Government to end your life,” promoting “death care” and, in the words of antiabortion leader Randall Terry, an attempt to “kill Granny.”

People need facts to make informed choices. Doctors and nurses are trained to present information about options for treatment in a manner which encourages patient autonomy. Whether the medical provider personally agrees or disagrees with your decision is not legally or ethically relevant. What is relevant is that the patient receives the data needed which in combination with one’s own religious or moral viewpoint, will lead to an informed choice; and then have well-drafted advance directives which communicates that choice with treatment providers and loved ones included with your estate plan. Not only will you get the care that you want to have, but you make sure that your loved ones aren’t forced to go to court to seek guardianship in order to authorize such care.

But then, what we’re seeing is the opposite of intellectual honesty.

The attacks on talk radio began when Betsy McCaughey, who helped defeat President Bill Clinton’s health-care overhaul 16 years ago, told former senator Fred D. Thompson (R-Tenn.) that mandatory counseling sessions with Medicare beneficiaries would “tell them how to end their life sooner” and would teach the elderly how to “decline nutrition . . . and cut your life short.”

House Minority Leader John A. Boehner (R-Ohio) and Republican Policy Committee Chairman Thaddeus McCotter (Mich.) said they object to the idea because it “may start us down a treacherous path toward government-encouraged euthanasia.”

Remember, these are many of the same people who rammed a measure through Congress endorsing the State of Florida’s effort to keep Terri Schiavo alive, arguing that the legislature should interfere with the acts of her legal guardian and the courts because she didn’t have a living will. So, by this shameless logic, paying doctors to have voluntary discussions with their patients about medical options and advance directives leads to earlier, state-sponsored deaths, but it’s perfectly all right for legislators to interfere with the most painful discussion a family can have because there was nothing in writing to tell a doctor what to do.

Progress on promotion of advanced planning

The American Bar Association’s Commission on Law on Aging reports that the Secretary of the US Department of Health and Human Services has sent a comprehensive report to Congress entitled “Advance Directives and Advance Care Planning.” The report, requested by Congress in 2006, focuses on (1) the best ways to promote the use of advance directives and advance care planning among competent adults as a way to specify their wishes about end-of-life care; and (2) addressing the needs of persons with disabilities with respect to advance directives.

The report thoroughly reviews the literature on “every aspect of advance care planning, analyses of key ethical and legal issues, and a discussion of opportunities to enhance the effectiveness of advance care planning and advance directives. The report is particularly timely as health care reform is in the public policy forefront, and several bills are pending on the Hill regarding advance care planning and improving care near the end of life.”

Charlie Sabatino, Esq., the head of the ABA’s Commission (and someone I feel privileged to know) has written a comprehensive analysis of the legal and public policy issues. I look forward to reading Charlie’s analysis.

Medicare may pay for advanced directive counseling by physicians

By a veto-proof majority, Congress has just passed an amendment to Patient Self-Determination Act of 1991 which would include counseling concerning advanced directives as part of the “initial preventive physical examination” (IPPE), a once-in-a-lifetime benefit given to all new Medicare beneficiaries under Part B. 42 U.S.C. 1395x(ww). In other words, physicians will get paid to raise the issues concerning the choices to be made where further efforts to cure disease in the course of the examination.

Sounds like a good idea… but as a practical matter, primary care physicians are economically pressured by both Medicare and private insurers to maximize the number of patients which they can see in the course of a day. Thanks to Ted Kennedy’s unexpected vote last week, the Senate passed legislation replacing the 10.6% pay cut for primary care physicians that went into effect on July 1 with a 0.5% raise through December 31, 2008. (Payments will rise by another 1.1% for calendar year 2009.) This raise is miniscule compared with the payments Medicare makes to specialists. New doctors are avoiding going into geriatrics and primary care because they can make more money in radiology or plastic surgery or other specialties with higher reimbursement rates.

I have to wonder whether, even though physicans will get paid something for counseling about the end-of-life issues, if those discussions will get short-shrift in some cases. Further, these discussions have to be held again and again, as the older patient’s attitudes about treatment and death frequently change as health deteriorates over time. I see no promise that physicians will get paid to raise these issues as the patients’ needs change.

Further, will Massachusetts physicians counsel patients about what can happen if the health care agent or a nursing home or hospital ignores those directives? Massachusetts is one of three states in the US where advanced directives –giving specific directions for care outside a health care proxy — are NOT legally binding. Some physicians may not be aware that there is a procedure to enforce the health care proxy in the Probate Court. These issues concerning patient rights are legal as well as medical — are the doctors going to be encouraging their patients to see their friendly local elder law attorneys? I think not.