As readers of this blog know, I strongly encourage my clients, groups that I have the opportunity to speak with, and my friends and family to prepare advance directives so that they can make their own decisions about what medical care they do, or do not, want to if they are unable to communicate that decision. 

I recently received this article by Dr. Nathan Laufner, President of the Maricopa County Medical Association. Dr. Laufner cautions that Living Wills and Do Not Resuscitate (“DNR”) Orders are frequently misunderstood, both by the individual and the medical personnel who need to rely on it.  For example, the individual may have one thing in mind when he says that he does not want treatment if he has a terminal illness, but his doctor may interpret that differently. (See Dr. Laufner’s article at http://www.mcmsonline.com/president/nathan-laufer-md/do-not-resuscitate-orders-lets-prolong-life-not-prolong-death.)

Living Wills and DNR Forms do raise complex and often confusing issues.  As Dr. Laufner points out, the hospital personnel who give these forms to patients as they are being admitted may not be equipped to answer the patient’s questions, not to mention the impact of all of the emotions that person may be feeling at that time. This is why I recommend that these forms be completed in advance of any particular illness or hospitalization, when a person has time to think about what they want and confer, sometimes more than once, with family members and loved ones.

Dr. Laufner also says that, when patients hand doctors Advance Directives that they have completed previously, they often don’t understand what they mean. While “self-service” forms, available from many private organizations or state attorneys general, are certainly better than nothing, Dr. Laufner’s observation highlights the importance of working with an elder law or estate planning attorney when preparing these forms. The attorney will take the time required to explain the meaning of the various options, and is the advocate for the individual, not his family or his health care providers, who, while well-meaning, may have different perspectives and interests.

The Associated Press has reported that 64% of Baby Boomers have not prepared a Living Will or other Health Care Advanced Directives. When asked why, the majority say that they are healthy and fit, so they see no need to dwell on what might happen when they are older. Read the rest of this entry »

A physician friend who knows I speak about the importance of Living Wills and Advance Directives shared the column of Dr. Nathan Laufer in the June issue of Maricopa County Medical Society’s ROUND-UP magazine (go to www.mcmsonline.comfor the electronic version). Dr. Laufer shares several poignant stories about patients who  requested “no code” orders without understanding that they were therefore refusing simple procedures that would allow them to leave the hospital more quickly, or not permitting hospital staff to place them on mechanical life support during surgery.  In Dr. Laufer’s experience, many patients who are given a checklist upon their admission to the hospital do not understand the implications of the “no code” or “Do Not Resuscitate” boxes, and admissions staff do not provide adequate explanations, or may not even be asked to do so.

The practice of requiring patients to state their preferences on DNR orders, or to complete Living Wills, dates back to the Patient Self-Determination Act of 1991, which requires healthcare  facilities to discuss advance directives with incoming patients.  Estate planning attorneys, and then state legislatures, followed with Living Wills that allow individuals to state their preferences regarding care – and the withholding of care – in more general circumstances. (See www.azag.gov/lifecareplanning  for a Living Will form that meets the requirements of Arizona law.)  Still, more than two-thirds of all Americans, including almost half of us who are over the age of 65, have not completed Advance Directives.  Dr. Laufer points out that, even when those directives are in place, it is hard to tell whether the information is available to the care providers in a manner that could affect their treatment decisions. 

I often point out that the best thing about completing advance directives are the family discussions they generate.  Many parents are surprised to learn that the child to whom they would like to give their Medical Power of Attorney has a completely different view about end-of-life care than they do.  In the best of these situations, the parent’s request that their child take on this role inspires an important conversation about values and the way our perspective on death changes as we age.  The legal document does not necessarily provide the answers, but it does  provide the starting point for family members to ask the right questions of each other.

Dr. Laufer points out that the Living Will and DNR Order should serve the same purpose between physician and patient.  He encourages doctors to ask their patients whether they understand the implications of the boxes they have checked and what they might want to have done in specific situations.  Laws, mandatory procedures and statutory language can only go so far, and none of them can take the place of honest discussion between patients and their doctors and family members.

The May 25 post on the New Old Age blog, http://newoldage.blogs.nytimes.com/, discusses the distressing topic of unnecessary diagnostic medical procedures for seniors.  This particular post is focused on the overuse of screening colonoscopies for elderly adults, but it includes links to other articles describing aggressive blood-sugar screening and the ordering of frightening and invasive mammograms for women with severe dementia. 

If ordered by a physician, most of these tests are covered by Medicare, with little or no co-pay.  This is not say that they are free, as the  costs that are absorbed by Medicare, private insurance companies and/or health care providers are passed along to the rest of us one way or another.

For very elderly or demented seniors, there are other, more personal costs as well.  These tests can be uncomfortable to downright painful.  Some require sedation, which can further increase confusion for hours and days afterwards.  The patient’s routine is disrupted, which can be further exacerbated by wait times and the requirement for fasting or other pre-test procedures.  Finally, there is the assault on the patient’s dignity by a stranger who is requiring the patient to disrobe and endure unwanted touching.

I certainly recognize that these tests can be extremely valuable.  I’m sure everyone knows at least 1 person whose life was literally saved because his cancer was discovered early through diagnostic screening.  However, as noted in the articles that are linked to the New Old Age post,  cancers that are detected through diagnostic screening only (in other words, there are no other symptoms) after age 80 tend to grow so slowly so that, most often, the cause of that person’s death is something other than the cancer. 

These tests makes even less sense when an individual has made it clear in her Living Will or other Advance Directives that she would refuse treatment for the disease once it is discovered.  When that’s the case, logic would suggest that the person would refuse an invasive test to find the disease in the first place.   

Since health care providers have not,  historically, drawn the conclusion, individuals may want to consider using specific language in these documents to make their wishes as clear as possible.  For example, if you are expressing the desire that you not be subjected to surgery or any treatment that would only extend your life if you are suffering from dementia or are otherwise unable to express your wishes, you might consider specifically addiing that you also do not wish to be subjected to the diagnostic tests. 

The best way to avoid such tests is to have frank discussions with the agent on your medical power of attorney and your primary care physician about your wishes in this regard.  As is the case with all advance directives and end-of-life decisions, the more that you plan ahead, the greater control you will retain.

April 16, 2011 is National Healthcare Decisions Day. This initiative is a collaborative effort to ensure all adults with decision-making capacity in the U.S. have the information and opportunity to communicate and document their healthcare decisions.  See www.nationalhealthcaredecisionsday.org for more information.

Enacted in 1990, the Federal Patient Self-Determination Act requires all Medicare-participating healthcare facilities and providers to ask about and make available information on Advance Directives. This legislation gives people the right to make choices and decisions about the types and extent of medical care they wish for themselves. They can also identify a legal representative to make healthcare decisions if they become unable to make decisions for themselves. If a person establishes a living will or durable power of attorney for healthcare or mental health purposes, the patient is acting on his/her rights of self determination.

I remember back in 1991 being trained as one of the people responsible for making sure that the hospital I worked in met the requirements of the legislation. It was an empowering experience. I wish I could say that since that time most people are aware and have acted on this right to self determination by completing a living will and medical power of attorney. Unfortunately, many people still are unfamiliar with the documents or have not taken the time to communicate their wishes in writing. Let’s take this time to learn more about Advance Directives.

National Healthcare Decisions Day is coming up on April 16.  You can celebrate by getting your Healthcare Advance Directives in place during the next 6 weeks. 

Although at least 70% of all adults say they have thought about end-of-life issues, and have had casual conversations with friends or family members, only 30% of us have any sort of Healthcare Advance Directives in place, and about 1/3 of those are out of date, either because they don’t reflect changes in your state law, because you’ve selected an agent who is now deceased or no longer available, or, sadly, because you have changed your perspective about what you would want done if you were terminally ill and unable to express your views.   If advance directives are not in place, your doctor, the hospital, or, in the worst of cases, the courts, are required to determine what you might have wanted or what you would have said in this situation.  A current, legally compliant Advance Directive allows you to speak for yourself.

If you would like to learn more, or if you are part of an organization or group that would like to mobilize your neighbors to communicate this important day, visit www.nhdd.org for all kinds of resources, including guides for that important conversation with family members or tools to help you organize events.

 

 

There seems to be more of a trend in hospice these days – patients are signing on sicker and are dying quicker, in part because they are not having candid, realistic discussions with their physicians about options and what their desires are for care. Late referrals impact hospice’s ability to provide education, effective symptom management and emotional support to help prepare patients and families as they face end-of-life. The article in USA Today (www.yourlife.usatoday.com) underscores the need for these discussions and provides helpful resources. These can be difficult conversations to have, so the best time to start is well before you are sick, when it is easier and less emotional to discuss your wishes.