PBS's "Frontline" Confronts End-of-Life Planning

A recent edition of PBS's FRONTLINE online, and an accompanying web page, discuss the hard choices we face regarding health care near the end of life.  The synopsis of the program is chilling and profound:  "How far would you go to sustain the life of someone you love, or your own? When the moment comes, and you're confronted with the prospect of "pulling the plug," do you know how you'll respond?"

In "Facing Death," FRONTLINE gains extraordinary access to The Mount Sinai Medical Center, one of New York's biggest hospitals, to take a closer measure of today's complicated end-of-life decisions. In this intimate, groundbreaking film, doctors, patients and families speak with remarkable candor about the increasingly difficult choices people are making at the end of life: when to remove a breathing tube in the ICU; when to continue treatment for patients with aggressive blood cancers; when to perform a surgery; and when to call for hospice."

"What modern medicine is capable of doing is what 20 years ago was considered science fiction," Dr. David Muller, dean of medical education at Mount Sinai, tells FRONTLINE. "You can keep their lungs breathing and keep their heart beating and keep their blood pressure up and keep their blood flowing. ... That suspended animation [can go] on forever. [So] the decisions at the end of life have become much more complicated for everyone involved."

"There are clinical situations where the odds are so overwhelming that someone can['t] survive the hospitalization in a condition that they would find acceptable, then using this technology doesn't make sense," says Dr. Judith Nelson, an ICU doctor at Mount Sinai. "And yet, in my clinical experience, for almost everybody involved, it feels much more difficult to stop something that's already been started." Dr. Nelson continues: "Nobody wants to die. And at the same time, nobody wants to die badly. And that is my job. My job is to try to prevent people from dying if there's a possible way to do it that will preserve a quality of life that's acceptable to them, but if they can't go on, to try to make the death a good death."

At every turn in the program, the importance of advance planning is obvious and palpable.  The educational materials accompanying the program explain:

People with serious illness may find themselves in a vulnerable position, where they may not be able to choose between different care options. Advance care planning can help you maintain a voice in your care, even if you become incapacitated and become unable to make decisions for yourself. Advance care planning can also be of great benefit to your doctors and your loved ones when they are faced with making medical decisions for you. Such planning is an opportunity for you to express your wishes and treatment preferences and to examine your values and how you want to live your life. The process can be complicated, and it may include writing down advance directives, such as living wills or durable powers of attorney, and designating a health care proxy.

Although you will want to have these conversations with your family, it is just as important to have them with your doctor and other clinicians, too. There are some key issues to explore and discuss, both when you are healthy and when you are sick with a worsening condition. Some of these steps will constitute who is legally responsible for deciding your care, an attorney-in-fact under a durable power power of attorney.  Other steps will ensure that a representative is able to access financial information, and if necessary, accounts to ensure prompt payment for your care.  There are a number of approaches you will want to take:

• Learn about advance directives. Advance directives help you state your choices for receiving medical care in advance of a serious illness or a health crisis. There are many legal considerations when formalizing advance directives. Although you do not typically need an attorney to prepare these forms, you should consult with an attorney regarding how best to incorporate these legal documents in your estate plan.  Regardless, many online resources provide information about advance directives. Each state has its own form of advance directive, which you can download. Your hospice or hospital will have information, too.  

• Designate a health care proxy and complete a living will by choosing the right health care spokesperson and sharing your values, beliefs and what is important to you in conversations with your attorney-in-fact, representative, your family and your health care team. 

• Discuss your care preferences and remove barriers to talking about plans for living with illness. These are difficult conversations, and it is easy to make excuses for avoiding them. There may be informational or emotional reasons behind your reluctance; think about what is going on, and then try to move forward. Have the conversation before the crisis.

• Review and update advance directives periodically, both in conversations with your attorney-in-fact and doctor AND in writing. This is especially important when major health and life events affect your decisions or your ability to make or express decisions. The importance of keeping your documents up to date cannot be emphasized enough.  In addition to ensuring that your documents properly incorporate for your decision makers a permissible  scope of authority, the documents must be practical, in that they should be easily identifiable, understood, and accepted by health care professionals without hesitation.  What is legally permissible, and what is practical can change over time, and hence your documents, too, should change.

There are obviously special considerations you will need to confront in appointing a health care proxy or attorney-in-fact.  Choose a health care proxy or attorney-in-fact who:

• Meets any criteria the law in your state require (you can find this out from professional associations, your local hospital, an Area Agency on Aging, your doctor or a lawyer);
• Is willing to take on the responsibility
• Is willing to talk to you and to honor your wishes
• Can make complex and difficult medical decisions even under great stress

Defining your hopes, wishes and care preferences broadly will help your family, friends and health care proxy to make decisions based on your preferences.  So these must be communicated.   Tell important people around you two things: who should make decisions for you when you cannot, who CANNOT make decisions for you when you cannot (especially if the reason you prefer others is based upon sharp differences in religious or ethical values or beliefs), and what sorts of decisions you prefer.

In the educational materials accompanying the program, Bud Hammes, clinical ethicist for Gundersen Lutheran Medical Foundation in La Crosse, Wis., advises a three-step approach to what can be a complicated process involving various legal, medical and financial decisions. He advises that you start with basic planning when you are healthy; reconsider those plans when you are diagnosed with a serious, progressive illness; and become more specific and precise about your wishes as you realize that you may be in the final stages of your illness. This approach, he says, "lets you know what you are deciding, lets your family know what you want and lets your physicians know what to do." Be aware, though, that the process of making, implementing, and communicating these decisions is complicated:

• All stages of planning require thoughtful, deliberate conversations with your family and friends and your health care team. Talk about your values and any deeply held beliefs or practices that might affect your care decisions. What quality of life do you want to have? What can you live with, or without, and how can your treatment help you to reach those goals?

• From the basic planning stages, when you choose a health care spokesperson, to the final stages, when you decide on very specific treatments, your wishes and goals may change. Periodic conversations with your doctor and family will keep everyone current about your medical situation and will also keep them up to date on what you are thinking regarding your care and treatment goals.

• As your understanding of your experience with your illness evolves, you can always revisit, reconsider and revise your advance plans and directives.

• Everyone (family, loved ones, health care team) MUST know who you have chosen to make your decisions for you as your health care proxy (also known as a durable power of attorney for health care) and know where to find your advance directive (which names your proxy and expresses your wishes). It is critical to have your advance directive readily available, not locked up in a safe deposit box. 

Don't be discouraged, however, because there is plenty of help and assistance available in negotiating this process.

Finally, be aware of the vulnerability of your decision-making when in conflict with other concerns.  In the face of death, many patients will do almost anything to live, but new questions are being raised about whether we can afford the growing cost of end-of-life care. "There's a tremendous pressure now to reduce care to numbers as though there's an algorithm for every decision," says Dr. Jerome Groopman, professor of medicine at Harvard University. "When you look at Medicare data on expenditures at end-of-life and what is very glibly termed "waste," 30 percent of all care is waste. That's the new mantra. It's very hard to know what that means. And it's very hard to bring that out of Washington and into a hospital and at the bedside, with a single individual facing death."

In other words, plan your care, or others will plan for you, with what may be unacceptable results.