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.

Retaining control over life decisions and maintaining dignity as the end of life approaches are top priorities for nearly everyone. These objectives can be achieved by good planning and the preparation of the proper directives under your state’s laws. These safeguards have been greatly improved in many states in recent years. Still, experts say, few seniors have the right tools to make sure their end-of-life wishes are followed by family members and caregivers.

People often think of such matters only when they or a family member are seriously ill. But if a stroke, dementia, or another incapacitating event occurs, it may be too late. If people cannot make decisions for themselves and do not have directives or a power of attorney in place, decisions may be made for them that they would never have agreed with if they had been able to decide.

Michael A. Kirtland, an elder care attorney in Colorado Springs, Colo., says there are two ways to make sure your final wishes are followed: one is through legal documents, and the second is by communicating your wishes to anyone who might be involved in carrying out those wishes should you become incapacitated.

“Everybody ought to have either a will or revocable living trust,” he says, with the preferred document depending largely on applicable state law. “Everybody ought to have a medical power of attorney … and everybody should have a living will.” Elder care lawyers in other states interviewed by U.S. Newswere not always in favor of living wills. But they all advocated a power of attorney for healthcare reasons, also called a healthcare proxy in some states. And some attorneys said they also recommended a separate power of attorney for property matters in addition to a healthcare proxy.

“A lot of these documents have different names in different states,” says Wendy Sheinberg, who practices on Long Island. In New York, the power of attorney cannot be used to make medical choices, she says, so a healthcare proxy is needed. “The healthcare proxy becomes effective at the time when you are unable to make medical decisions for yourself.” However, the proxy is not limited to end-of-life situations. A living will, by contrast, does speak to end-of-life decisions, she explains. As such, it may include very specific wishes in the event a patient’s condition is terminal and they are unable to speak for themselves.

The healthcare proxy, or power of attorney, leaves more specific decisions in the hands of the healthcare agent or advocate who you designate as your proxy. For this reason, attorneys say, you should find someone (usually a family member) you trust who either agrees with your wishes, or at least promises to carry them out. Often, the agent is required to sign the healthcare proxy as well, to acknowledge an understanding and acceptance of his or her role.

The first, and often hardest, step toward creating final directives, experts agree, is having an extended conversation about how you want to be treated at the end of your life. Elder law attorneys say they may devote many hours to helping people not only select the right healthcare advocate, but open up and seriously think about how they want to end their life. The discussion usually begins between spouses and spreads to other family members. But in the case of an older parent whose spouse has died, an adult child often triggers the discussion.

“They are very hard conversations to have, and they are important to have,” Sheinberg says. “This can’t be over the phone. You have to sit down with these people and say, ‘I trust you, I love you, and I’d like you to be the person to make medical choices for me.’ You have to really sit there and have that conversation.” Family dynamics often make choosing the best advocate difficult, and a spouse or child simply may not agree with a person’s final wishes or be able to carry them out when the time comes.

“In discussing your desired medical choices with the person who you ultimately name as agent, it is important not just to tell them what choice you would like made, but to also explain your decision-making process and what values you consider important in formulation that decision,” she adds. “Understanding a principal’s decision making process can be helpful if the agent later confronts a situation that they did not specifically explore … The goal of these documents is to empower someone else to make the decisions you would make for yourself but for the incapacity, having a deep and heartfelt conversation about these things goes a long way toward meeting that goal.”

“Clients have weird thought processes that lead them to choose particular healthcare agents,” says Will Lucius, an elder law attorney who works at Paul A. Sturgul Law Offices in Hurley, Wisc. “Rather than selecting an agent that can make can and will actually follow the person’s wishes, clients often choose their agents in order of priority by age or who is in close proximity. These choices, while convenient, can often lead to individuals being selected as an agent who are simply not the most appropriate person.”

Gregory S. French, an elder law attorney in Cincinnati and president of the National Academy of Elder Law Attorneys, says he favors separate powers of attorney documents for healthcare and property because they require different attributes in an effective agent. “I often find the best advocate for care and well-being may not be the best person to manage finances, and vice versa,” he says.

“The sad cases I see are people with debilitating conditions, and they wait and wait and wait,” says Kirtland. “If people would come to me as their health issues are first discovered by their physicians … then I can provide some help.” If they wait until their decision-making abilities are compromised, however, they may not even be able to execute advance directives, and key decisions will be taken out of their hands.

“When their spouse is suffering from advanced dementia and they’re looking at the door of a nursing home,” Lucius notes, “they’re not terribly interested in having a will or doing estate planning. They’re trying to figure out how to come up with $7,000 a month to afford the nursing home.”

“I don’t think you can ironclad final-care wishes,” sums up Howard Krooks, who practices elder law in Boca Raton, Fla. “I think you can state what you want but then [you have to] cross your fingers. It’s a question of whether the healthcare providers are on board with what you say you want done.” The medical profession’s goal to preserve and extend life may still be in conflict with end-of-life wishes.

“I think that that is starting to get stripped away, and the concept of dying with dignity is starting to take hold,” Krooks says. “But it’s going to take some time.”

Testimony of Mickey MacIntyre
Chief Program Officer, Compassion & Choices
Before the Institute of Medicine’s Committee on Transforming End-of-Life Care

Good afternoon. I am Mickey MacIntyre, Chief Program Officer for Compassion & Choices, a national nonprofit consumer organization dedicated to improving care and expanding choice at the end of life. I appreciate the opportunity to address the committee today.

Compassion & Choices’ central tenet is that Americans are free to choose how they live – so it follows that when the time comes, we are free to choose how we die. This private, personal decision belongs to all Americans – free from government interference. U.S. courts around the country, including the United States Supreme Court, have upheld this right.

Today, I want to address one specific problem: unwanted medical treatment. Patients have the right and the responsibility to guide their own health care throughout their lives, with their trusted health care professionals. Many Americans give thoughtful consideration to medical decisions that may need to be made if they are injured or debilitated, and they articulate their decisions in advance directives.

Congress passed the Patient Self-Determination Act (PSDA) in 1990 to reinforce an individual’s right to determine the course of his health care. This Act amended Medicare and Medicaid law to require providers to follow policies and establish procedures with regard to advance directives. The PSDA established that if these policies are not followed, the Secretary of Health and Human Services (HHS) may decide that the provider is ineligible for payment through Medicare and Medicaid.

President Obama reasserted the importance of respecting patients’ rights in a 2010 memorandum to HHS asking the agency to, “ensure that all hospitals participating in Medicare and Medicaid are in full compliance with [these regulations]…[t]hat all patients’ advance directives…are respected, and that patients’ representatives otherwise have the right to make informed decisions regarding patients’ care.”

Nevertheless, many patients’ decisions are overridden or ignored in the weeks and months before their deaths. This happens for a variety of reasons and can lead to invasive and fruitless testing, needless suffering, unrelenting pain and a prolonging of the period before death. Patients are tethered to monitors and machines despite their determination to reject unwanted treatment and desire to die at home in the embrace of loved ones.

A new study published in JAMA found that between 2000 and 2009, treatment in intensive care units in the last month of life increased from 24% to 29%. The accompanying editorial concluded, “The focus appears to be on providing curative care in the acute hospital regardless of likelihood of benefit or preferences of patients. If programs aimed at reducing unnecessary care are to be successful, patients’ goals of care must be elicited and treatment options such as palliative and hospice care offered earlier in the process than is the current norm.” Compassion & Choices could not agree more.

Policy makers can and should provide both the carrot and the stick to ensure that patients’ wishes are honored: financial incentives for honoring advance directives and financial DISincentives for disregarding patients’ expressed wishes.

The Centers for Medicare and Medicaid Services (CMS) should deny payment to providers where there is clear evidence that specific treatments were unwanted — similar to policies where unnecessary treatment is provided.
The Justice Department is investigating and taking legal action against hospitals and doctors groups when instances of unnecessary treatment are exposed. The same due diligence should be trained on unwanted medical treatment. It is always unnecessary and should be considered a never event.

The explosion of the aging population coupled with the nation’s financial and moral commitment to providing health care to an ever-increasing number of Americans reveals that the scourge of unwanted treatment should be an urgent priority for this committee. Among the next steps Compassion & Choices recommends are:

Initiate and improve the quality of conversations among health care professionals, patients and families about end-of-life decisions, including:
1. reimbursing medical providers for participation in advanced care planning with patients and their families well in advance of illness or before facing end of life;
2. providing financial incentives and training to encourage medical providers to offer all the information and counseling necessary for decision making when securing informed consent;
3. ensuring that the full range of medical care and treatment decisions, including curative care, palliative care and medical assistance in dying, are freely available to patients without institutional or reimbursement barriers.

Further CMS should:
1. exclude from covered services and reimbursement any treatment that contravenes an adult patient’s informed health care decision;
2. track complaints where patient wishes were ignored and ensure that the survey and certification processes for providers require attention to patient’s advance directives;
3. revise billing forms to have providers indicate that care was rendered in conformance with patient’s advance directive and informed consent.

I thank you for the opportunity to testify today, and I will be happy to answer questions or provide written follow-up information.
Thank you.

Submit Your Story of Unwanted Treatment

Have you had an experience involving unwanted or unnecessary medical treatment. If so, please take a moment and tell us your story in an effort to help ensure that all patients have the right to guide their own health care decisions throughout their lives. Please follow this link to our stories submission page.

I only know one thing for sure in my life these days, and that is that I will someday die.

How, when or where is a mystery, but it will happen — that I know.

No, I do not have a chronic or terminal disease. In fact I am quite healthy.

Do I have a choice of how, when or where I will die? Do I have a choice of deciding for myself when medical treatment changes from benefiting my quality of life, to being a burden which only prolongs my death? What role does my doctor play in all this? How do I choose someone to advocate for me in these matters, if I am no longer able to communicate my wishes?

Writing about these questions is far easier to do than answering them.

I have been an advocate for others before: for my husband, my mother-in-law and father-in-law. I am one of the lucky ones, for I have no regrets that the decisions I made on their behalf were the right ones, and family and friends supported them. We talked often about their quality of living, and when they would be ready to die.

But it was not always smooth.

One day, I got a call from the nursing home where my mother-in-law resided. She was in the advanced stages of Alzheimer’s. The nurse on duty had determined that there was something wrong with her, had called the doctor, who in turn said to call 911 and have her transported to the hospital for tests. I got to the hospital only to find that she was connected to a number of tubes and that several tests had been ordered.

I was shocked! Although she had not spoken a word for several years now, I could easily see she was afraid, confused and trying to tug at those invasive tubes they had put in her body.

When the doctor arrived, he politely told me to go home and await the results of the tests that were ordered.

I told him in no uncertain terms that there would be no tests, no surgery, no treatment and that he was to get her back to the nursing home and never do this again. I said that I was not leaving until she was back in the nursing home.

To my amazement he agreed. My mother-in-law was transported back to the nursing home and continued to live for another year, comfortable and safe where she was.

For that I am thankful.

When I became a facilitator for Honoring Your Wishes, I found a process that I can use to help myself and others plan for their own care, whether they are 25, 75 or 100. For me, this has been an important journey, one that helps me and others to explore our own beliefs, taking time in a safe environment, and ultimately to give the gift of a clear advance directive to loved ones.

Most of us do not want to talk about this. Is it up to our doctors to bring this up only in a crisis situation? Shouldn’t we be informed about our health care options, even when healthy, and especially when we have a chronic or terminal illness, and to discuss these with our doctors and family?

My hope is that we can overcome our fears of losing loved ones, and of them losing us. These conversations can be the best gift of love we can provide to those who are close to us.

My goal is to read my advance directive on my birthday as a celebration of life, of my taking responsibility for myself and not leaving it to others.

There is no right or wrong answer here. You make your choice, I have made mine.

The Changeable Meaning of “Do Everything”

In the final stages of congestive heart failure, Bart Andrews lay in bed, minimally responsive and gasping for breath. He was surrounded by his adult children, whose conversation kept returning to the refrain, “We want everything done for him.”

Mary Winters, RN, one of my colleagues at the Visiting Nurse Service of New York’s Hospice and Palliative Care Program, was in the room for a first visit. One of her great skills — and a core competency for any care provider who works with people at the end of life — is listening.

As the conversation unfolded, the adult children told years-old stories of when their mother died. “‘I remember Dad saying he didn’t want to be hooked up to a tube, or a ventilator, like Mom was,’” Mary quotes one of the children as saying. Then, one by one, the others voiced similar memories.

“They needed time to explore,” says Mary. “An important part of any family conversation is to understand what is meant by ‘do everything.’” Does it mean surgery, feeding tube, ventilator, or does it mean pain medication, oxygen, antibiotics if necessary, and other measures aimed at comfort and quality of life?

Eventually, and in dialogue with the care team, the family agreed that their father would not want a ventilator. The goals of care then shifted to making him comfortable in his final days. It was only through the good, hard work of family conversations that consensus was reached by all involved about the best course to follow in an incredibly difficult situation.

Difficult Conversations, Difficult Time

In previous posts, I’ve discussed the importance of having end-of-life conversations in the midst of life, before a medical crisis. In this post, I’d like to explore the necessity, challenges and goals of having those conversations once the diagnosis of a life-limiting condition is confirmed.

Conversations before and after a crisis have much in common, such as the need for specificity, openness, honesty, and full family participation, although there are differences. For one, conversations following diagnosis usually include members of the care team: Doctors, nurses, social workers, hospice or palliative care clinicians often typically center on the question, “What are the goals of care?”

Drawing from my own and my colleagues’ decades of experience guiding end-of-life conversations, as well as from such industry standards as Robert Buckman’s book How to Break Bad News and a care team protocol called SPIKES (Setting, Perception, Invitation, Knowledge, Emotions and Strategy), I outline below how you and your family — along with your care team — might get this most important conversation underway.

1. Make sure the right people are assembled.
Make sure the care team sets aside enough time and the right place for a reflective, in-depth conversation in a secure and quiet space. The care team should give you at least 45 minutes or an hour, and everyone should have a place to sit.

Decide who should be in the room (and who, if anyone, should not), and try to arrange a time when everyone can be present. If this proves difficult, at least make sure key decision-makers are present. If the eldest son of the family, who has the power of attorney and is the de facto family spokesman, has to work late, postpone the meeting until he can be present. If the daughter who lives 10 minutes from mom and does most of the caregiving has to be at a piano recital, reschedule the meeting.

Let everyone express his or her thoughts, no interruptions.

The overriding goal of this and continuing conversations is to get everyone on the same page in the patient’s interest. If that cannot be done, whoever is designated as health care proxy has the last word, but remember: You have to live with the consequences of those decisions. So make sure everyone’s voice is heard.

2. Make sure everyone is clear about the medical condition.
As end-of-life care practitioners, we often begin by asking the patient and the family members to describe the illness at hand — as they see it. The goal is to make sure the patient and family share an understanding about the current state and expected course of the illness, and that this understanding matches that of the care team. Knowledge, after all, is power, and is vital to informing the “goals of care” conversation.

From the care team’s perspective, this step is not about explaining the diagnosis in technical terms as much as it is about listening. “I always allow for silence,” says Mary, “and wait for questions.”

Often we find there is a discrepancy between what doctors have said and what patients have heard. “I’m sure I can get stronger,” we hear many patients say. “They just have to give me something to help me eat more, and I’ll get stronger.” Cheryl Avellanet, RN, VNSNY Hospice and Palliative liaison to Mount Sinai Medical Center, says she responds to the hope — “I hope that will happen, too” — but also speaks to the reality, saying, “At this point, the chemotherapy is not working as we had hoped and the tumor is still growing.”

Cheryl aims to be gentle but persuasive and, over time, shift the conversation to the here and now. She says, “What if, in spite of your being so strong and doing so much, the cure does not happen? What is most important to you?” Then, she says, patients begin to talk about end-of-life goals, such as being comfortable or making sure a spouse has support.

3. Discuss goals and hopes.
Once the patient, family and care team share a common understanding of the current medical condition, the next question is: “Given all this, what are your hopes and goals, for yourself and your family?”

Some people want to fight the illness with all they’ve got, take any extreme protocol, travel to any country for treatment. On the other end of the spectrum, some people want to avoid the hospital at all costs and let nature take its course. We recently cared for a retired police officer diagnosed with advanced prostate cancer, who said, “I don’t want to suffer. I don’t want any pain. I just want to stay home with my beautiful wife of 70 years and be taken care of.”

Most people are in the middle of this wide spectrum, and it is our job as end-of-life caregivers to ask questions, listen to answers and help the patient and family structure their decisions based on their own values. Some people are more comfortable speaking about clinical goals, wanting to be comfortable and pain free, or, as a patient once told me, wanting to be “present” and avoiding sedating pain medications. Others prefer to talk about life goals, such as spending more time with grandchildren, getting outside to the park every day, or evaluating their life’s “bucket list” for final trips and projects.

4. Honor those who can no longer speak for themselves.
For patients who can no longer speak for themselves, we begin by asking the family members what they know of their loved one’s wishes. “What did she say about where she wanted to be, at home or the hospital? About what she wanted done, from everything to nothing to somewhere in the middle? About what kind of care she wanted to avoid (as in Mr. Andrew’s case in the example above)?”

This is why, as I have written in previous posts, it is so incredibly valuable to have end-of-life conversations earlier rather than later. “It’s so liberating for the families who’ve had previous discussions,” Mary explains. “I say, ‘What has your mother said to you in past about how she wants to be treated?’ or, ‘Has anyone else in the family had this experience, and what did she say then?’” Often, Mary says, they respond as Bart Andrews’ family did: “She said, ‘I never wanted to be like that.’”

Even if a family has not held a formal end-of-life conversation, they may well have heard their loved one express thoughts in passing or at particular life junctures, such as before major surgery or while experiencing a death of a loved one.

I was struck while reading Michael Wolff’s heart-wrenching article about his mother’s end-of-life journey in New York magazine (a must-read for anyone who has a parent, is a parent or knows a parent) by the acknowledgement that the author and his well-meaning siblings did not listen to their mother when a cardiac surgeon wanted to repair a worsening heart condition, something that fixed her heart but did nothing to stem her advancing dementia. “Her wishes have always been properly expressed, volubly and in writing,” he writes. “She urgently did not want to end up where she ultimately has ended up. She had enough sense left to resist — sitting in the hospital writing panicky, beseeching, Herzog-like notes, to anyone who might listen — but of course who listens to a woman who scribbles such notes?”

5. Determine the level of information you and your family want.
Finding the right level of detail for the conversation is a choreography between the care team and the family. Some families, Mary finds, want statistics and extremely detailed accounts of prognosis. Others say, “I trust you, do what you think is best.” Or, “What would you do if it were your mother?” And still others may defer to certain cultural traditions, such as some Asian parents who say, “I don’t want to know, tell my son.”

Bart Andrews’ family, sophisticated adult children who were working professionals, wanted to know statistics, such as, “What percentage of patients with this condition ever come off the ventilator once they are put on it?” (Answer: A miniscule percentage.)

“Know your audience,” Mary advises caregivers. “Know how much detail they want. It helps everyone in the long run.”

6. Keep the conversation going.
Now is not the time to hold back. Communication is the key to understanding, and mutual understanding leaves little room for regret.

And keep in mind that there are other ways to communicate if words fail, as they often do when someone is in the final days or weeks. VNSNY Hospice Social worker Stephen Borow is currently living through the experience himself, with his own elderly parents both in hospice care. On a recent visit, Stephen’s father was crushed because his mother, who suffers from dementia, did not appear to recognize him. “I put their hands together,” says Stephen. “He went quiet, and she went quiet. There are ways of finding connections, even if it’s not with words.”

Sometimes, that’s how the conversation continues.