National Healthcare Decisions Day is April 16^th

Portland, OR – With only one in four Americans stating their end-of-life care decisions before they are incapacitated, Compassion & Choices today asked all Americans to “Make Your Plan” for National Healthcare Decisions Day (NHDD), April 16. The importance of planning ahead was evident in the February 6 edition of The Journal of the American Medical Association, which reported that 26% of Medicare beneficiaries spent part of their last month of life in an intensive care unit — an increase from a decade ago.

The organization offers resources free of charge, including advance directive forms for every state and tools to stimulate discussion and aid decision-making. Forms can be downloaded at compassionandchoices.org or ordered by phone at 800.247.7421.

Compassion & Choices also announced the availability of exclusive content: a dementia provision for advance directives. According to a report released last month by the Alzheimer’s Association, Alzheimer’s deaths continue to rise — increasing 68 percent from 2000-2010. The new provision can be added to any advance directive or living will to advise physicians and family of the wishes of a patient with Alzheimer’s disease or other forms of dementia.

President Barbara Coombs Lee explained why the dementia provision is so important. “Most advance directives take effect only when a person is unable to make healthcare decisions and is either ‘permanently unconscious’ or ‘terminally ill,’” she said. “But what of the situation in which a person suffers from severe dementia but is neither unconscious nor dying? Without this provision in advance directives, families and doctors have no sure guide for the care of the estimated 450,000 people who will die this year with Alzheimer’s.”

Compassion & Choices has launched a social media campaign featuring bold graphics and the taglines “Ask me” and “Tell me” to prompt discussion of advance care planning, sharing the graphics from its Facebook page: facebook.com/CompassionandChoices.

Completing advance directives is the first step toward patients receiving the care they want – and only the care they want. Compassion & Choices is conducting a national campaign to stop unwanted medical treatment so that healthcare providers and institutions take all steps to honor patients’ wishes. The campaign petition can be found here: tinyurl.com/umt-petition

For more information please visit www.compassionandchoices.org

Compassion & Choices is a nonprofit organization working to improve care and expand choice at the end of life. We support, educate and advocate.

During the holiday season, we often think of giving in terms of tangible, often costly items.

There is, however, an extremely valuable gift that we can offer at any time of year, and which costs virtually nothing. It’s something all of us can offer to our family and loved ones. It’s the knowledge and understanding of what we would want done at the time of a health emergency, when we cannot make decisions for ourselves.

An advance directive, when properly completed, is a legal document that stipulates who should make decisions at a time when an individual no longer can. It also allows you to specify your wishes for medical treatment and just how aggressive medical personnel should be with your care.

At a minimum, an advance directive should name the primary person you trust most to make major health care decisions about your welfare. This person is called your “agent” for health care decisions. You may also name an alternate in case your first choice is unavailable for any reason.

An advance directive can be completed by any adult and is made legal by the signature of a notary public or the signatures of two qualified witnesses. Of course, as we grow older, a directive becomes more and more important, since the incidence of health care emergencies increases as we age.

Many critically ill patients and families who I have met in the hospital have never sat down and actually talked about their wishes before such a tragedy occurs. We all tend to avoid these discussions, but after a stroke, a heart attack or life-threatening event, your loved one may not be able to talk at all or understand these issues.

Would you want to have cardiopulmonary resuscitation (chest compressions, shocking, intubation) if you are found without blood pressure or pulse? What if you had advanced cancer and were not expected to survive more than months or perhaps a year? Would CPR still be your wish? What if you were on a ventilator (the breathing machine) and doctors could not wean you off after many days? Would you want to be fed by a tube through your abdominal wall into your stomach when you could no longer eat normally?

These detailed answers do not necessarily have to be recorded in the advance directive, but it is wise to have the conversation with your agent and family about these issues.

There is also a new form for people who have complicated, chronic illnesses. It spells out a person’s exact wishes with regard to CPR, intensity of treatment and artificial nutrition. This is called a POLST form, which stands for Physician Orders for Life-Sustaining Treatment. All medical personnel must honor this document and follow your wishes.

We’ll talk more about the POLST form next month. In the meantime, your health care provider can assist you to set up an advance directive and POLST, if appropriate, and answer further questions about completing these forms.

Mr. J. had an implantable cardioverter defibrillator (ICD) for advanced heart failure. Having survived one episode of cardiac arrest, in which he nearly died, he was at high risk for another episode caused by a rapid, unorganized heart rhythm called ventricular fibrillation. Should this happen, the ICD would shock his heart back into normal rhythm. But at his daughter’s wedding, the ICD fired nine times. Each time, it saved his life, but the painful episodes terrified him, and he asked that the ICD be turned off.

Dr. Eva Chittenden, associate director of palliative care at Harvard-affiliated Massachusetts General Hospital, met with Mr. J. to explore his decision further. He stated that he’d already been hospitalized five times within 12 months, and he felt this took too much time away from his family.

They discussed his personal values and what action he’d want taken if his heart stopped, and the ICD was no longer there to revive him.

After long talks with Dr. Chittenden and his family, Mr. J. chose a “Do Not Attempt Resuscitation/Do Not Intubate (DNAR/DNI)” order. The decision meant he could continue seeing his cardiologist and other doctors, remain on his medications, and return to the hospital for intravenous diuretics. But he would not be revived if his heart stopped.

Doctors wish all their patients would make their preferences known in advance, like Mr. J. did.

“A talk with your doctor about your life goals, and what kind of medical care can help you attain these goals, is an extremely important part of health care for anyone with a chronic illness such as heart failure,” says Dr. Chittenden.

Providing an advance directive tells your doctors and emergency physicians what level of care you want, should you not be able to speak for yourself. It reflects your innermost values, especially what trade-offs you’re willing to make to stay alive. If length of life is most important to you, you may be willing to accept more technology than if quality of life and being at home are your primary desires,” Dr. Chittenden explains.

“Discussing these wishes and decisions with those closest to you is equally important, because one of them may need to make decisions for you in the event of an emergency,” she adds.

In addition to an advance directive, there are two measures you can take to ensure your wishes are respected:

1. HEALTH CARE PROXY

It’s important to designate a surrogate decision maker who’ll have the legal authority to make medical decisions for you, if you’re unable to make them for yourself. The situation may be temporary–when you’re under anesthesia, for example–or permanent. The person you choose might be a spouse, child, or trusted friend.

“Having a legal medical surrogate is very important, because if two family members disagree about what should be done for you, the legal surrogate has the final say,” says Dr. Chittenden.

In many states, all you need to do is ask your doctor’s office for a form, complete it, and have it witnessed by two people. In other states, you may need the assistance of a lawyer or notary. Ask your doctor’s office for direction.

2. A NEW TYPE OF LIVING WILL

Thirty-four states have adopted legislation encouraging people with life-limiting illness to fill out a form with their physician that directs their care in a medical emergency or other situation in which they’re unable to make decisions for themselves. It’s called a Medical Orders for Life-Sustaining Treatment (MOLST) form (or POLST, for Physician’s Orders). It’s more specific than a living will, which is often too vague to direct care in a meaningful way.

The MOLST form may document your preferences only about resuscitation, or it may also specify your wishes regarding hospitalization, dialysis, artificial nutrition, or hydration. The form serves as a medical order if an ambulance is called to your home or if you are hospitalized away from home. It should be completed with your physician following a discussion on the goals of your care. You may change your decision at any time and replace the form with an updated one.

DON’T WAIT UNTIL IT’S TOO LATE

Advance planning should be done while you are able to make and articulate your decisions. “You may never need these documents, but if you do, your wishes for life-sustaining care are more likely to be respected,” says Dr. Chittenden.

You know how if someone e-mails you over and over, and doesn’t stop until you finally respond or just go ahead and do what they’ve been asking you to, it’s really annoying, but also a pretty good strategy on their part because they ended up getting what they wanted?

The same thing, it turns out, works with doctors. Only in this case what they’re being nagged about is having an important conversation with terminally ill patients that, let’s be honest, they shouldn’t have been avoiding or forgetting in the first place.

The number of patients with incurable cancer whose charts indicate whether or not they want to be resuscitated can be doubled, a new study in the Journal of Clinical Oncology found, provided doctors are sent e-mails reminding them to ask.

Per national guidelines, this conversation is supposed to occur when a patient’s prognosis is less than a year.

Barring their ability to set up a Google alert for every time a patient’s given 12 months or fewer to live, researchers at the Massachusetts General Hospital cancer center in Boston rigged a system where each time a patient began a new round of chemotherapy, their oncologist’s inbox was spammed with messages reminding them to have The Talk. The e-mails got right to the point, beginning: “Your patient has recently been diagnosed with incurable lung cancer. If you have not already done so, this may be an appropriate time to begin a dialogue about his preferences for care at the end of his life.”

Doctors who ignored or deleted the first e-mail would continue to be inundated with reminders until they had filled out the section of their patient’s electronic health record that dealt with their final wishes.

The results were encouraging because, hey, here’s a simple and easy-to-implement system that can jump-start something that isn’t happening nearly as often as it should — pre-email alerts, fewer than 15 percent of the patients used as a control had documented their wishes. That said, the ultimate outcome of the emails was that after a year, a third of patients had their decision clearly stated in their electronic health records. That leaves the majority of the 100 test subjects — people with incurable lung cancer — for whom the end-of-life area of their file remained blank.

If a discussion isn’t had, patients will end up being subjected to aggressive life-saving measures they never asked for. Resuscitation efforts can be emotionally traumatizing for everyone involved, not to mention costly. Most people, once they’ve had everything involved explained to them, end up choosing not to have hospital staff attempt to prolong their life.

A 2012 report from the California HealthCare Foundation found that, while 80 percent of people said that if they were seriously ill, they’d want to discuss their end-of-life options with their doctor, only 7 percent had actually had this conversation.

When the conversation does happen, according to an editorial that accompanied the e-mail study, it’s usually during the stressful, painful, and confusing final hours of a patient’s life. The decision is wrested from the patient — or from a distressed family member called upon to act on their behalf — without anyone having the time to fully consider the implications.

A paradigm change seems urgently needed here, as places like The Conversation Project are trying to make the early and often discussion of end-of-life wishes more common practice. In the meantime, we’ll just need to hope doctors don’t figure out how to use their spam filters.

How would you like to star in your own reality show?

In applying the concept of “reality” to healthcare costs, some stark truths need to be realized by all U.S. citizens to avoid an inevitable crash. The challenge to all of us as consumers is to honestly examine our health habits and to take personal responsibility in being part of the solution to our country’s healthcare crisis.

There is one thing all of us can do, and it’s painless, proactive and will not call for any diet plan, smoking-cessation plan or payment plan. It is taking the time to complete an Advance Healthcare Directive (or just Advance Directive). The potential healthcare cost savings are staggering, but

70 percent of Americans do not have an Advance Directive, according to the Centers for Disease Control.

According to federal Medicare statistics, end-of-life care provided in 2010 accounted for more than 25 percent of total annual spending. Reasons for this include aggressive treatment that was not necessary or was not desired by the patient. Advanced medical technology has brought increases in life spans, despite chronic diseases. U.S. studies show that in areas where increased Advance Directives exist, health-care costs are reduced and patient satisfaction is high.

Before you start glazing over and saying, “It’s just another thing the doctor asks me when I go to see him,” I challenge you to fully understand the power of an Advance Directive in your life. Many people think it’s just for the old, but it’s not. It is a document completed by you on how you would like life-sustaining treatments to be provided to you when you can no longer speak for yourself. This includes young and old alike, as well as accident victims or people with chronic disease. The Advance Directive gives you control on how you want to live if sudden tragedy or chronic disease enters your life. In essence, you will be dictating your own reality, rather than allowing others make very difficult, emotion-filled decisions on your behalf.

As a nurse who has worked in health care for more than 30 years, I have experienced, both professionally and personally, the tragedy that takes place when there is conflict and turmoil between loved ones during end-of-life situations.

In a country such as ours, we may take many things for granted and may put off the inevitable: death. However, the more groundwork that is laid in communicating wishes and preferences prior to a crisis, the more that meaningful time and energy can be devoted to the crucial issue of saying goodbye to our loved ones.

The first step in developing an Advance Directive is to take the time to ask the hard questions regarding your feelings about end-of-life care. Do you really want aggressive treatment to sustain your life if there will be no quality of life?

It’s important to remember that an Advance Directive is not a death sentence. Aggressive treatment usually is included, but the sticking point is at what point are these measures withdrawn?

So who’s up for the challenge to take the first giant step in controlling your health-care dollars? Begin a dialogue with your primary-care physician to guide you to the necessary paperwork.

Though it may be a reality you don’t want to face right now, together with all Americans, this one thing, which gives you control over your own life, has the potential to make a significant dent in the preservation of future healthcare costs.