When advance directives are ignored

When we discuss end-of-life wishes with clients, some clients say they want everything possible done to keep them alive, regardless of their physical condition or possible outcome. If they can hang on for a while longer, they reason, there might be some medical advance around the corner that restores their health. If that is your inclination, you have every right to direct your health care providers to pull out all the stops.

On the other hand, you also have the right to reject extraordinary medical procedures that could result in what you consider an unacceptable quality of life. In my experience, that attitude is far more common. But disturbingly, according to an April 10, 2017 New York Times article, the right to refuse medical treatment is sometimes not honored, even when patients have made the appropriate legal preparations. The logic of many medical providers seems to be to err on the side of caution: After all, someone who has been resuscitated can be disconnected from life support, but you can't bring someone back from death. 

One instance mentioned in the article is that of Beatrice Weisman. In 2013, at age 83, Weisman was hospitalized after having a severe stroke. A resident of Maryland, she had a Physician's Order for Life Sustaining Treatment, or POLST. (POLST is under development in Florida but not yet available here. In states that do permit them, a seriously ill or frail patient or his/her health care surrogate may establish, in consultation with the individual's doctors, guidelines for the types of treatments the patient should or should not receive. The POLST is different from the advance directives now available in Florida because it is an actual physician's medical order, an official part of the patient's medical record.)

Weisman's POLST indicated she was not to receive CPR in the event of pulmonary or coronary failure. It was located in her medical chart at her bedside. Nonetheless, when hospital staff found her in bed turning blue, they rushed to save her. She was defibrillated and received epinephrine injections. Several of her ribs were broken during the administration of CPR. Weisman survived. After a few years of physical therapy and round-the-clock care - paid for out-of-pocket by her family - she remains bedbound, attached to a feeding tube and catheters, and suffering from dementia. The family has sued the hospital for keeping her alive against her express wishes. Says her son: "I'm happy to see my mother each day, but I'm also seeing her suffer each day."

As we live longer and longer, it is inevitable that more cases of this type will occur. The courts seem inclined to side with plaintiffs. For example, the Georgia Supreme Court recently rejected a hospital's claim of immunity, stating, "It is the will of the patient or her designated agent, and not the will of the health care provider, that controls."

Of course, being revived against one's wishes is not always a function of overeager doctors and hospital staff.  It is all too common for a healthy person to have a valid living will prepared, yet fail to notify his/her family or health care agent that it exists, or where it can be found. Many people just stick it in a file cabinet or lock it up in a bank vault, and forget about it. And once someone becomes cognitively incapacitated, he/she may not be able to tell others that the document even exists. 

Your best bet to ensure your end-of-life wishes are honored is to make sure your physicians, family, friends and health care agent know about your advance directives, where they are located, and how they can be accessed. Some suggest downloading the documents to your mobile phone and to your loved ones' mobile phones, too.

Read about the various types of Florida advance directives here.

Read the original New York Times article on this subject here.

Read about the POLST form, currently in the planning stages in Florida, here.

Brittany Maynard passes away

Brittany Maynard ended her life peacefully on November 1 with the aid of prescription drugs  obtained from her physician in Oregon, where physician-assisted suicide is legal. Maynard was diagnosed with an inoperable brain tumor earlier this year and was given six months to live, during which time her seizures intensified and she became increasingly debilitated. A beautiful, just-married woman of 29, her situation and her decision to end her life attracted, and continues to attract, significant discussion about a patient's right to die.

The morality of physician-assisted suicide is an issue I leave for physicians, ethicists, clergy, patients and politicians to sort out. Right now the practice is legal in Oregon, Washington state, and Vermont, and is currently being considered by several other states. It is not legal here in Florida, nor is there any legislation pending to make it so.

Wherever you stand on this most sensitive of sensitive issues, Maynard's situation makes one thing clear: Most people want to remain in control of their lives and their deaths. That, of course, is where thoughtful planning can help. As a Florida elder law/estate planning attorney, I help people plan so that their health care decisions can be made by someone they know and trust, consistent with their own values and desires. 

Putting your wishes in writing gives you control over your destiny and that means peace of mind. The place to start is with a well-drafted health care power of attorney in which you name the person(s) you want to make your health care decisions if you are unable to make them yourself. That is quite a responsibility to put on someone's shoulders, so you must be sure the person you choose is intellectually and psychologically up to the job -- and willing to do it. Also have a discussion with your health care agent about your core values and preferences for medical treatment; that will help your agent feel more secure if he/she is called on to make the decisions for you. Appoint back-up health agents. From time to time, check to make sure all your agents are still willing and able to serve. I have had people walk into my office with documents that name a long-deceased spouse as agent - and no backup agents! Also think about establishing a living will, a document with provides instructions specifically related to end-of-life care. 

You can learn more at my website about health care planning in Florida.

Joan Rivers: Life turns on a dime sometimes

I saw Joan Rivers perform at Florida Atlantic University about 30 years ago. Whether you love or loathe the comedienne, it's undeniable she exuded incredible energy. She maintained a full schedule right up until her cardiac arrest a few days ago, turning in a Broadway performance the night before her throat surgery. The operation was an out-patient procedure - nothing to be concerned about for the otherwise  healthy 81-year-old.

These kinds of events remind us that sometimes, life turns on a dime. We can't dwell on them; we would drive ourselves crazy if we do. Better to live our lives with confidence, anticipating the best. And the best way to do that: prepare ourselves and our families for that turn-on-a-dime event. If you want to be truly free from unnecessary worry, you have to know you're prepared for whatever life throws your way.

My own family faced a similar, unexpected health crisis one year ago Sept. 5. My 76-year-old brother-in-law fell and hit his head on the sidewalk after exiting a restaurant, apparently because of aortic stenosis. While awaiting cardiac surgery to repair the valve, he sustained a brain aneurysm, had a stroke, and remained on life support for days, until we consented to disconnect life support. He was a gifted classical pianist who on the day of his fall, was practicing for a particularly challenging performance. The unveiling of his gravestone will be at a cemetery in New York State at the end of this month. 

Back to Rivers: The press releases say that her family will soon consider removing her from the breathing apparatus. I do not know for sure, but I suspect her daughter Melissa, who has become something of a Dean Martin to Rivers' Jerry Lewis in recent years, may be the decision-maker. I hope for her sake that her mother had a living will and other health care documents in place to guide her daughter's decision and spare her any more agony than she is already experiencing.  My brother-in-law's written wishes were certainly a help to my family.

Wishing peace to Rivers' family, and to the thousands of families each day who find that their lives have turned on a dime.

Recent cases show importance of considering end-of-life issues in your estate plan

Modern medical advances continue to blur the line between life and death. Think of the phrases that have entered our vocabulary in recent years: brain death, persistent vegetative state, minimal consciousness. These are terms that reflect today's evolving medical realities. The good news is that medicine now gives those who might otherwise die a chance to recover. The bad news is that irreversibly incapacitated people can be kept alive for prolonged periods, plunging patient and family into a medical no-man's-land.

You probably want to control your own destiny during your lifetime - and during the dying process, too. Since you are likely to be uncommunicative at the end, and since the "end" can now mean  weeks, months and even years, it is essential to put your wishes for treatment in writing, and to share your wishes with your loved ones. Besides a health care power of attorney authorizing someone else to make your health care decisions, a living will can convey your wishes for treatment if you are ever in a persistent vegetative or end state with no hope of recovery. With your preferences in writing and furnished to your doctors and loved ones, you are more likely to get the care you do want, and not be forced to have the care you don't want. It will also ease some of the trauma your decision-makers will undoubtedly feel, and help unite family members who may have different values and views on what should be done.

Consider these recent cases, one very personal to me, that underscore the now blurry line between life and death, and its impact on patient and family:

Thirteen-year-old Jahi McMath was declared brain dead on Dec. 12, 2013 by the coroner's office after a cardiac arrest following a tonsillectomy at an Oakland, California Hospital. Neurologists have confirmed that she cannot breathe on her own, has had no blood flow or electrical activity in her brain. The family has fought successfully thus far to keep the girl on a ventilator; they argue that since her heart is beating, she is, effectively alive. According to medical experts, bodies of brain-dead individuals can be maintained on respirators for months, or in years in rare cases. Obviously, a 13-year-old has no legal authority to have executed a living will or other legal documents, and the decision is up to her parents or the courts. But this tragedy could have as easily befallen a 23- or 83- year-old.

In Texas, Marlisle Munoz, 33, has been on life support since suffering a brain hemorrhage on November 26, 2013. She was 14 weeks pregnant at the time. Her husband, a paramedic and firefighter, has requested that she be removed from life support, arguing that his wife, also a paramedic, would not wish to be kept alive by artificial means. The hospital has this far refused to honor his wishes, citing a Texas law that prohibits the withdrawal of life-sustaining support from a pregnant patient. The woman's family is in agony and will be bringing legal action. The patient's parents also are asking to have her life support removed. "They're prolonging our agony," her father has told journalists.  

Update 1/14/14:  Read Munoz v. John Peter Smith Hospital.

Update 1/24/14: Texas judge orders Munoz off life support, hospital complies

Further afield, Ariel Sharon, the former Prime Minister of Israel, just passed away after spending eight years in a coma following a stroke. Unlike the cases above, Sharon was not brain dead; his doctors said brain scans revealed responses to his family's voices, and his son reported that Sharon could move his fingers when requested to do so. Sharon simply never woke up, and since 2006 was kept alive with a feeding tube, dialysis, and as recently as last year, surgery related to a kidney infection.

Lastly and on a personal note, my brother-in-law passed away on September 5, 2013. This vital man had fallen and hit his head near his home in New York. Herb suffered a cerebral hemorrhage and fell into a coma. His daughter and my wife were his health care co-decision makers.  After several days, when it became clear there was no chance of any meaningful recovery, they came to the painful decision to remove artificial ventilation. It was an incredibly difficult decision on an emotional level, but because he had put his wishes into a living will, and his health care power of attorney indicated that he was more interested in retaining quality of life over quantity of life, there was no question in their minds about what he would have wanted. Thank you for giving our family that final gift, Herb, and rest in peace.

Read more about Florida advance medical directives.

Caregiving in the cards for many

If you're lucky enough to have a parent live to a ripe old age, there's a good chance that you and your siblings will ultimately get involved in assisting your parent. While your parent will always be your parent, a mother or father's disability tends to turn that relationship on its head. It's not an easy transition for anyone, particularly because both parent and child are usually so unprepared for it.

My office gets dozens of calls each week from frantic adult children who need to help their parents but have no information about any financial or legal plans the parent has made, if any. Without a Durable Power of Attorney authorizing a child or someone else to handle the parent's financial affairs, and a Health Care Power of Attorney authorizing someone to handle medical decisions, the child is, well, stuck. If a parent's cognitive abilities have declined too dramatically, the parent may not even be in a position to lay the groundwork.

I know it can be uncomfortable to approach your parent to ask about his legal documents, his financial status, whether or not he has long-term care insurance, etc. If you are the parent, initiating that conversation may be uncomfortable for you, too. But as with anything, an ounce of preparation is worth a pound of cure.

Every parent should have at the very least a Will, a Durable Power of Attorney, a Health Care Power of Attorney, and a Living Will. See the short video below that explains why this is so important, and for help, contact The Karp Law Firm or a certified Elder Law Attorney in the state in which your parents reside.

Rhinestone Cowboy not riding off into the sunset

Glen Campbell, the Grammy Award-winning writer/performer of the hit song Rhinestone Cowboy, is not riding off into the sunset. Despite his recent diagnosis of Alzheimer's Disease, the 75-year-old musician intends to perform as long as he can. He just released an album and has embarked on a farewell tour. Campbell is just one of many celebrities who have made their diagnosis public. What makes Campbell him unique is his plan to remain on the public stage. He makes no apologies for his lapses, laughing when he told a CBS interviewer that he was not sure of his age.

What is not unique is the years of creeping symptoms that elapsed before Campbell's diagnosis. It can be hard to make a definitive diagnosis, since most people become a bit forgetful with age. But beyond that, most people  tend to sweep their symptoms under the rug. According to the Alzheimer's Association, the average person has about eight years to live after symptoms become noticeable to others. That makes early detection very important. The earlier the diagnosis, the sooner critical medications can be administered; the sooner patient and family can adjust; and the sooner vital legal planning can be done.

Anyone diagnosed with Alzheimer's or another dementia needs to put an effective estate plan in place without delay. If there is an existing estate plan, it should be reviewed. If the patient has a spouse, he/she must also create or review his own estate plan, since in all likelihood the spouse's plan will have named the patient as Personal Representative, Trustee, Durable Power of Attorney agent or Health Care Surrogate.

The estate plan should include:

A Durable Power of Attorney for Property, which will empower one or more persons to handle the patient's finances when he/she no longer can.

A Health Care Power of Attorney, giving someone else the right to make the individual's medical decisions.

A Living Will, specifying what kinds of life-prolonging treatments the patient wants or does not want.

A Will and.or Living Trust.

Contact our elder law/estate planning attorneys to examine your estate planning options.

Keep the courts out of your medical affairs!

Florida residents, pay attention to the sensational legal battle unfolding over 85-year-old Al Barnes' medical care. It offers many lessons on what to do and not do to stay in control over your medical destiny, keep the courts out of your personal medical decisions, and discourage family conflict. Here's the case in a nutshell:

A former heavy equipment salesman, Barnes has been in a Minnesota hospital for months, sustained by a respirator and feeding tube. His second wife of 27 years, Lana, is insisting on aggressive treatments that she feels will reverse his condition. Aligned against her are Al's sons by his first marriage, who claim their father did not want to be kept alive by artificial means; and Al's doctors, who claim that aggressive treatments are futile.

But it gets even more complicated, Last week's court hearing revealed that Lana had removed two pages from Al's 1993 medical directive - two pages in which he stated that he did not want to be subjected to extraordinary, life-prolonging measures. Moreover, a more recent health care power of attorney dated 1994 was also been produced, this one naming Barnes' son as his decision-maker.

The case drags on and it's up to the court to decide at this point. But we can learn important lessons from this unfortunate situation:

First, make sure that you discuss your end-of-life wishes with ALL your loved ones.

Second, put your wishes in writing. Your Medical Power of Attorney and your Living Will should be drafted by a Certified Elder Law Attorney with experience in this area, so that the documents are crystal-clear.

Keep these documents updated and keep them in a safe place. Let loved one know where to access them if they are needed.

Make copies of your documents for each of your loved ones.

Follow these simple rules and they will go a long way to keeping peace in your family and making sure your wishes for medical treatment are honored, without interference from the courts.

Read the full story on Al Barnes' end-of-life issues.
 
Read more about Florida Medical Power of Attorney and Living Wills.

Frontline tackles death and dying

Helping people create Advance Directives - living wills, health care powers of attorney and so on -- is a big part of my Florida Elder Law Practice. It requires courage for clients to ponder what kinds of treatments they want if they are not able to speak for themselves. They do so not only out of concern for themselves, but for their loved ones. By documenting their wishes, my clients hope to ease the burden of loved ones who may be called upon to make their health care decisions. These documents can also head off family conflicts that tend to arise when loved ones differ over "What Mom really wanted."

One advance directive, the Living Will, is widely misunderstood. It is not just a "pull the plug" document. It has to be carefully crafted to document your wishes. Maybe you are someone who wants everything and anything to prolong life. Maybe you want only palliative care. Maybe, with the range of life-prolonging technologies available today like feeding tubes, artificial respirators and resuscitative techniques, you would accept some, but reject others.

Few decisions are as challenging and personal. A new Public Broadcasting series, Facing Death, gets up close with patients, families and physicians dealing with end-of-life decisions. The program shows us how others deal with these situations, and may even help to clarify your own thoughts about what you'd like if you are ever in that situation. I also highly recommend that you look at the readers' comments at the bottom of the page, which are thought-provoking and enlightening, too.

Florida Living Will Guidelines Under Review

A Living Will tells your doctors what kinds of treatment you want at the end of life. But it's your doctor who is responsible for telling everyone else: hospital, nurses, EMT's, Hospice and so on. Doctor's orders are essential to ensuring that a patient's wishes are honored. And that, according to Florida State University's Center for Medicine and Law, has not always happened. To remedy the problem, Florida State University's Center for Medicine and Law is formulating a new program to ensure physicians understand patient's wishes and communicate those wishes effectively to health care providers. It's called the Physician Orders for Life-Sustaining Treatment,  or POLST program. A conference to be held on Sept. 20 in Orlando will bring together health care providers, legal experts and the public to figure out how to make POLST a legal reality in Florida. Read more here.

When The Diagnosis is Alzheimer's: Legal Steps to Take

My staff and I had the privilege of attending the Alzheimer's Educational Conference June 3-4 in Palm Beach. Our attorneys and case manager talked with many caregivers, policymakers and professionals. The Palm Beach County Convention Center was filled to capacity for the event -- which gives you an idea of just how serious this epidemic is. Here are the hard facts: From 2000 to 2006, while deaths from diseases like heart disease and cancer declined, deaths from Alzheimer's Disease actually increased 46%.

If you or another family member have been diagnosed with the disease, my advice is: don't panic. Easy to say, I know. You are not alone! There are many resources to assist you, some of which appear at the end of this post. On the other hand, don't procrastinate! The journey ahead is challenging, and the better your planning, the more energy you and your family will have to take advantage of quality time. I always tell my clients that in the case of Alzheimer's Disease, time is not a friend. Many of the necessary legal and financial steps can only be taken while the patient remains competent. Here are some of the plans you should press ahead with before too much time passes:

The patient should establish a health care power of attorney, authorizing one or more persons to make his/her medical decisions if he/she can no longer do so. A durable power of attorney should also be established, which will empower one or more persons to handle the patient's financial and business affairs. If the patient already possesses these documents, they should be reviewed without delay to make sure they are in sync with your current circumstances and comply with any changes in the law that have occurred since they were drafted. Because no one knows how the future will play out, the patient may also wish to create a living will, specifying what kind of life-prolonging treatment he does/does not prefer if he is ever in a persistent vegetative state or end-stage condition. A Last Will and Testament should be drafted. In some cases, a revocable trust or an irrevocable trust may also be appropriate estate planning vehicles.

If you are the spouse of someone diagnosed with Alzheimer's Disease, it's easy to forget about your own needs - health-wise and legally, too. Have a certified elder law attorney examine your estate planning documents as well as your spouse's documents. Many of my clients are so concerned about their ill husband or wife that they forget they've named their spouse to serve as their own decision-makers. Obviously, those kinds of arrangements will have to be modifed.

Your spouse might eventually need long-term care. If you have long-term care insurance, all the better. If not, you may want to start thinking about asset protection strategies that will allow you to tap into Florida Medicaid benefits and/or Veterans benefits. Again, the advice of a certified Elder Law Attorney is invaluable at this time. 

You are not alone! In addition to your attorney, there are many community resources to guide you on your journey, including the Alzheimer's Association,  the Florida Department of Elder Affairs, and Alzheimer's Community Care.

Medical providers must honor advance directives

Writing a Living Will takes a lot of soul-searching. It's reassuring to know that if and when the time comes, your medical providers will honor your most personal wishes.  Unfortunately, there have been cases in which that hasn't happened. A new presidential memo instructs medical providers to honor your advance directives. Read more here.

Step Right Up to the Estate Planning Sideshow!

Step right up, folks! See this year's estate planning oddities, brought to you by Congress and this year's bizarre federal estate tax situation!

People trying to get the best tax deal for their families are going to some pretty strange lengths. For example,  they're establishing living wills that request life-prolonging measures if the estate tax exists, asking to pull the plug if it doesn't!

But who can blame these folks? America is living in a legislative limbo. Since Jan. 1, 2001, there has been no estate tax due to congressional inaction. If Congress fails to act before the end of this year, the estate tax will return to its pre-2001 levels on Jan. 1, 2011, with tax on estates over $1,000,000. But Congress could act and change next year's tax levels... or even bring the estate tax back this year at some level, possibly making it retroactive to Jan. 1, 2010. No one knows.

National Public Radio's "All Things Considered" had an entertaining and informative report on this situation. Listen.

Living Wills Work. Krauthammer's Wrong

As a Florida elder law attorney, I have seen thousands of clients derive peace of mind from knowing they have a living will that will be respected by their doctors and families. And I have seen thousands of families turn to their loved one's written wishes for reassurance and guidance when called upon to make heart-wrenching end-of-life decisions for a loved one.

So I was appalled that Charles Krauthammer asserted in his Aug. 20 column that living wills have no value for patients, families or doctors! Not only was I appalled -- I was fearful that readers might fall for his flawed logic. Krauthammer doesn't know the law, and he doesn't seem to know the real world - at least, not the one you and I live in. Read my letter in support of living wills published in the Palm Beach Post.

The Great Beyond

Longtime New York Time columnist Jan Brody has helped people make decisions for healthy living. Now, in Jane Brody's Guide to the Great Beyond, she turns her attention to making the difficult decisions about the end of life. And she should know. Her husband of 44 years died in February. Fortunately, Brody writes, she and her husband were prepared, having thoroughly discussed these difficult issues and put all the important documents in place, including a living will. At least, says Brody, the experience was not made worse by family arguing over the decision-making process.

And as for those who would rather not theink about their own mortality? Brody states that doing so is ultimately unfair to the people who are closest to you. Click here to connect to the Amazon site to learn more about the book.