By Richard C. Senelick, M.D.
The Huffington Post
May 11, 2012

A few months ago my 95-year-old mother reached a point where we had no choice but to move her to a nursing home. It took a few weeks for her to adjust to her new environment. Still, she calmly notes, “I have lived too long and I just want to go to sleep and not wake up.” I do not doubt her honesty. She seems to have accepted the transition to her final “home,” but she wishes that her death would be painless and sudden.

Last fall, my wife almost died. While she has recovered, the experience of “near-death” has extinguished her fear of dying. She tells me that had she not awakened from her coma, she would not have known any difference. She points out that there was nothing unpleasant about the experience. She wants to see our grandchildren grow older and plant more flowers in her garden, but her voice reveals no anxiety when she speaks about her inevitable death.

The attitudes of these two very different women in my life make me realize that I need to examine my attitude toward my own mortality. If they are able to accept death so easily, why do so many people fear death?

Physicians and Death

I met my cadaver the first week of medical school. This is an indelible memory for most physicians. Despite requisite lectures regarding death and respect, the initial encounter may be met with gallows humor — a sign of everyone’s anxiety. Other than gazing on my grandmother in her casket, I had never laid eyes on, much less touched, a dead human being, but I now found myself surrounded by 50 of them in the anatomy lab. This man who had donated his body to science was a tall, large-boned, African-American gentleman whose skin had yellowed slightly and seemed unnaturally wrinkled the result of the gallons of preservatives that a lab technician had pumped into his body. I never knew him when he was alive. So, I realize now that I felt somewhat disconnected from this man, his death, and the concept of my own death.

As medical students, we never cared for an individual for any length of time — we just rotated from one service to the next. My first real experience with the death of someone I had come to know occurred during my internship. I distinctly remember Bill, a 22-year-old red-headed, clear-eyed cowboy with metastatic malignant melanoma. I can still clearly recall the layout and details from the room where he died, and how I was overcome with an unfamiliar feeling.

Today, as a neurologist, I witness people’s deaths. Some are friends and family I have known for years, while others, I have never seen before their gurneys wheel into the emergency room. These experiences have shaped my personal views regarding my own death and how I might prefer to die. Because of our exposure to and understanding of how people die, physicians, at least in my experience, tend to deal with death differently than those outside of the profession.

How do physicians approach their own death? Do they make different decisions for their patients than they make for themselves? In a recent article in The Atlantic, Dr. Ira Byock, a palliative care physician, characterized the American mindset towards death as, “I don’t want to think about [it] … Our cultural tendency is to avoid serious conversations about the end of life.” We fight, scream, and kill each other over the front end of life. We argue vociferously over being pro-life or pro-choice, but we put our collective heads in the sand when it is time to discuss how we want to die. Dr. Byock informs us that the “way Americans die remains a national disgrace.”

Physicians often talk amongst ourselves about how we would like to die, and our decisions are strongly colored by what we have seen. We know all about futile care, misuse of intensive care units, or the prolonged use of chemotherapy and medications that fail to enhance the quality of life. Not only does our society warehouse the dead in cemeteries, but we also warehouse the dying in hospitals and nursing homes.

Many times a grieving family will demand excessive care, and our society defaults to prolonging life, but doctors usually do not choose this for themselves. In my experience, it’s very common for physicians to prescribe more care for a patient than they would for themselves or their family.

Are Physicians Different?

It might seem that physicians, as knowledgeable medical professionals, would want more care than non-physicians. We have access to and education about the latest and greatest therapies. We can find out who is running the latest experimental study and maneuver our way into the test group. But, oddly enough, physicians don’t die like the general public — we tend to choose less care. We have seen one too many intensive care units filled with 85-year-olds with what we consider to be no hope of ever returning home. We have seen the horrible side effects of treatment and know that there are things worse than death. Most physicians have had a lengthy discussion with their family, and told them that they do not want any heroic measures.

A recent poll asked physicians to complete the thought, “If I or my family were faced with a terminal illness with a great potential for a terrible course and reasonable options have failed…” The respondents unanimously asked for limited interventions, and to avoid any extraordinary measures that extended life. Physicians’ unique perspective allows them to enter this discussion from a different point.

Not All Physicians Are the Same

A study of 233 physicians in Israel evaluated the “Fear of Personal Death Among Physicians.” It looked at physicians in the specialties of pediatrics, oncology, internal medicine, surgery and psychiatry. Prior studies had found that psychiatrists who were the least frequently exposed to death were the most anxious about their own death, followed by internists (moderate anxiety) and then surgeons, who had the greatest exposure to death (least anxious).

The physicians in Israel did not vary by specialty. Interestingly, though, physicians who had known more close friends and family who had passed expressed less fear and anxiety about dying. In other words, intimate exposure to death affects one’s own perspective. As would be expected, the older physicians were less anxious about dying than the younger ones.

While this study was done in Israel and may not generalize to the United States, religious physicians had a greater personal fear of death than their non-religious colleagues. Other studies have replicated the finding that religious physicians were more frightened of punishment after death — an interesting finding that should lead to a good deal of discussion and debate.

It Is Inevitable

As a group, physicians face end-of-life decisions more openly and have made it clear to their loved ones and peers what they do and do not want done if they become terminally ill or have little chance of a quality survival. Now it is your turn to make those same decisions, talk with your family and write your wishes down on paper. Let us know your feelings and how you plan to deal with this event that none of us can escape.

By Colleen Kottke
fdlreporter.com
May 12, 2012

It was a discussion that Mary Peterson didn’t want to have with her children. Then a heart attack in her early 60s forced the issue out into the open.

It was a discussion that Mary Peterson didn’t want to have with her children.

Then a heart attack in her early 60s forced the issue out into the open.

“When I brought up the conversation about my end of life wishes, my kids danced around the subject, telling me I was young and had lots of years ahead of me,” the former Fond du Lac woman said. “But I knew if something happened to me I didn’t want my kids to have to make those hard decisions.”

Conversations and decisions about advance directives are much easier for individuals and their families when they aren’t facing an immediate crisis, said Sister Mary Mollison, vice president of Ministry & Spirituality with Agnesian HealthCare.

“Through thoughtful planning and discussion, loved ones find it much easier to follow their family members wishes if they have already taken the time to share their personal insights,” Mollison said.
Advance directives are written documents people use to guide medical decisions should they become unable to speak for themselves. Wisconsin law only recognizes two forms of advanced directives: the Power of Attorney for Health Care and the Declaration to Physicians (the Living Will).

According to a study conducted by AARP, nearly 70 percent of Americans do not have advance directives, even though such a document would remove a great burden from families.

“When my grandmother had a stroke that left her incapacitated, I remember my mother wringing her hands, debating with her brother and sister about what grandma would have wanted. There was so much guilt and anguish that could have been avoided. Look what Terri Schiavo’s family went through,” said Peterson, referring to the young Florida woman whose family fought a long, bitter court battle over whether or not to remove the comatose woman from life support.

The Schiavo case demonstrates the importance of having an advance care directive for those 18 and older.

“A lot of people think a living will or power of attorney for health care is for someone old or really sick. But most of the situations that have generated updates in the laws governing these documents have been due to younger people,” said Mary Jagdfeld, social work case manager for Agnesian’s Care Management Department.

Although advance directives are easy to obtain online, through an attorney or health care provider, Jagdfeld says many people shy away from actually filling out the forms.

“It’s a hard thing for people to think about at any age,” Jagdfeld said. “These documents are meant to be a communication tool between the individual and whomever they are naming to be their agents.”

Jagdfeld said many people come face to face with the importance of having advance directives in place when they find themselves immersed in a medical emergency.

“Many times people consider these documents when they’re in a hospital setting either because they’ve begun to realize that they’re vulnerable or their children begin to understand that their parents are at risk,” Jagdfeld said. “Sometimes even then it takes a third party or someone neutral who can ask the questions. I’ve had spouses who couldn’t talk about it and needed a third party to help facilitate the discussion.”

Many healthcare providers are required by law to routinely ask their patients and families if they have completed an advance directive, and can help with available resources to complete the documentation needed.

“This way, in any emergency situation, the document is readily available so the family is not caught without knowing what their loved one wishes,” Mollison said.

Jagdfeld says more and more people are obtaining advance directives on their own.

“I think some have had an experience that made them realize it’s important. When they’re getting their finances in order, this is also what they talk about,” Jagdfeld said. “And then there are those who don’t do it because they don’t feel an immediate need or understand how to do it. That’s why we’re here.”

By Alan Wright
The Baptist Standard
May 10, 2012

“Dignity” and “responsibility” are the words that come to mind when I speak with families of hospital patients about advance-care planning. I can think of no better way to protect and sustain patients’ dignity than providing the opportunity to make decisions regarding health care, especially when those choices extend past patients’ ability to speak for themselves.

Too frequently, families express regret in failing to approach the issue of death and dying prior to the crisis in which they find themselves. Within my own immediate family, my father was forced to complete his directive to physicians and medical power of attorney days before the doctor scheduled an open-heart surgery to remove a tumor. Fortunately, my father survived the surgery and is doing well. He would be the first to tell you, however, he should have been praying and spending time with family and friends rather than meeting with his attorney. To my father’s credit, all documents were in place when he entered surgery that day. As a family, we knew my father’s wishes regarding life-sustaining treatment.

As a hospital chaplain who frequently has discussions with patients and families about advance-care planning and end-of-life issues, I can say the majority of people I meet are not legally prepared when they are admitted into a hospital. Whether it’s the patient’s fear of talking about such serious issues or the proverbial excuse “I’ve been meaning to …,” few have taken the responsibility to express in a legal document how they want to be treated by a health care facility if they were diagnosed as terminally or irreversibly ill.

I could tell you account after dramatic account of families dividing over how to treat a loved one when medical efforts to sustain a meaningful life have reached their limits. However, a large majority of these true stories are basically the same. The patient fails to make wishes known and now can’t speak for himself or herself. The family, often well-meaning, has conflicting opinions of the patient’s desires for treatment. The crisis heightens, and so does the anxiety of the family. Name calling and accusations between family members occur, causing, at times, I imagine, irreparable damage to family relationships.

As a minister in a health care setting, my greatest wish for families is that they reconcile during these crisis moments. It’s a beautiful sight to behold when families practice forgiveness and reconciliation when a loved one becomes terminally ill. It is equally as sad to see families torn apart because they disagree on what the individual, now silent, desired regarding treatment by a medical team. In these frequent cases, the individual’s decision not to make a choice is after all, a choice. The other choice is to be prepared when the inevitable health care crisis occurs.

I encourage you to talk to the people to whom you are closest and let them know your thoughts about issues such as artificial life support and end-of-life care.

Also use this day to research and ask questions about advance directives and possibly have one completed before you are in a crisis situation. As people of faith, end-of-life care should not be a taboo topic but one spoken within the walls of our churches and in the intimate settings of our homes. The conversations may be difficult, but they also can be healing and bring families closer.

Make a choice, and let the future for which you are planning include providing guidance for your family regarding your health care wishes and ensuring that your own dignity be valued by your health care team.

CBS News
May 10, 2012

Argentina’s senate on Wednesday overwhelmingly approved a “dignified death” law giving terminally ill patients and their families more power to make end-of-life decisions.

92-year-old retired school teacher faces sentencing for selling helium suicide kits
Jack Kevorkian dies, but physician-assisted suicide lives on
Peter Goodwin dies at 83, aided by Death With Dignity Act he championed

The law passed by a vote of 55 to zero, with 17 senators declaring themselves absent. It passed the lower house last year.

Now Argentine families won’t have to struggle to find judges to order doctors to end life-support for people who are dying or in a permanent vegetative state. Getting such approval can be very difficult in many countries, particularly in Latin America, where opposition from the Roman Catholic church still runs strong.

“I think it’s very good,” said Angel Robles, a 71-year-old retired taxi driver with terminal esophageal cancer who entered a hospice last week. “If I’m OK, these are things that I have to decide. But if not, I have confidence in my daughter.”

The measure expressly forbids euthanasia - actions that provoke death - and instead focuses on the rights of patients and their families. It also absolves doctors of any legal responsibility when they follow the patient’s wishes.

The law applies to the terminally ill as well as patients suffering from irreversible and incurable illness or injury, and says they have the right to refuse surgical procedures, hydration and nutrition, reanimation and life-support systems. Rather than seek a court order, all they need do is prepare an advanced health-care directive and sign it before a notary, with two witnesses.

The ethical challenges surrounding end-of-life issues become more difficult when the patient can no longer speak for himself and has not prepared such a formal document. In these cases, the Argentine law empowers family members or legal representatives to make the decision on the patients’ behalf.

Some lawmakers expressed discomfort about withdrawing feeding tubes or life support to someone who can no longer communicate. Deputy Julian Obligo of the conservative PRO party pleaded with senators to eliminate this reference, alleging that it amounts to euthanasia by hastening death. And Sen. Sonia Escudero, a dissident member of the governing Peronist party, alleged that withdrawing nutrition and hydration could cause pain to a dying person.

Medical and bioethical experts say otherwise — that an abundance of scientific evidence shows that dying people naturally stop eating and drinking for a reason — their bodies are shutting down — and that force-feeding them at that point actually causes pain. In contrast, without food and drink, the metabolism produces substances that actually produce feelings of euphoria.

By withdrawing feeding tubes, “you make their time more comfortable, not less, when they are near death,” said Dan Brock, who teaches medical ethics at Harvard University in Cambridge, Mass. “All the evidence suggests they are not suffering.”

“This was highly controversial 20 years ago when it began to be debated in the United States, and the Catholic Church still officially opposes it, but here anyway it’s now a matter of accepted medical practice,” Brock added. “This is important because in general Latin America has been very behind on these issues and so it’s nice to see Argentina leading the way.”

In the United States, Oregon, Washington, and Montana are the only three states to have legalized physician-assisted suicide, procon.org reported.

“I don’t have a single doubt that we’re doing the right thing here. Of course, without a doubt there are still many other things that need to be done,” said Alfredo Martinez, a senator with the opposition Radical party, which is supporting the measure.

By tipping the balance in end-of-life decisions toward patients and their families, the law should help reform a medical system that has been far too paternalistic, with doctors or judges making decisions that ignore or conflict with the patients’ wishes, said Dr. Isabel Pincemin, the medical director of the Hospice San Camilo, which has cared for hundreds of dying people in a home just blocks from the presidential residence.

“This law is in a way an invitation to all the doctors to take into account the patient’s wishes, but what has to happen now is a cultural change,” she said. “Death is the thing most denied in our society: We have lost the understanding that death is natural, and so we too often try to maintain life even in impossible situations.”

What Argentina needs next is a palliative care law requiring health care providers to support hospices for the terminally ill, she said. There are only a half-dozen hospices in the country of 40 million, and too few people know that dying people are supposed to get pain medicine for free, she said.

“Far too many people are dying horribly bad deaths, alone and abandoned,” she said.

Robles says he’s grateful his doctor pointed him to the hospice, where he now gets close 24 attention for free.

“Hopefully no one will have to suffer,” Robles said, thinking about the law. “Nobody wants to see a person suffer.”

By Marisa Demarco
Alibi.com
April 12, 2012

Dr. Aroop Mangalik has been a cancer specialist for 30 years. He cares for a lot of people who are nearing the end of their lives. Sometimes—rarely—a terminally ill person in a lot of pain asks for a lethal dose of medication. “And the few times that request has been made, I told the patient, Sorry, given the law in New Mexico, I cannot do that.”

It’s a hard thing to say, he acknowledges, when someone is suffering immensely and there is no cure in sight. “We try and find as many other ways as we can to keep them comfortable.”

Mangalik and his colleague, Dr. Katherine Morris, are part of a lawsuit filed in District Court requesting clarification of a state law. The statute on the books makes it a fourth-degree felony to help someone take his or her life. The suit argues that the law doesn’t apply to a licensed physician providing aid to a dying person who’s mentally competent. The suit also makes the claim that state law is overly vague and violates the state’s constitution.

The doctors are represented by the American Civil Liberties Union of New Mexico and the legal branch of national nonprofit advocacy group Compassion & Choices. Mangalik and Morris work at the University of New Mexico’s Cancer Center, but Mangalik says he and his colleague are acting independently in filing the lawsuit and do not represent UNM.

Complicated issues surrounding what’s being termed “aid in dying” have become more prevalent in the last 40 years, Mangalik says. “The problem has been aggravated by the development of intensive care units and other advances in medicine.” It used to be that when people became seriously ill, they would grow weaker and eventually die. “But now, with the use of all variety of drugs, oxygenation and all of these things, you can keep the body going for long periods of time.” He avoids the word “alive” deliberately.

While a patient is propped up by modern medicine, family members hope for recovery. “That does happen in some cases.” But for certain stages of disease, he adds, there is no treatment.

Morality and Freedom

Two states— Oregon and Washington—have passed laws legalizing aid in dying. Montana’s Supreme Court ruled in 2009 that state law protects physicians who help a terminally ill patient seeking death. Compassion & Choices cites a 2005 Gallup poll and a 2011 Harris poll showing that more than two-thirds of Americans support allowing physicians to assist in the death of terminally ill patients.

Last year, the United States Conference of Catholic Bishops issued a policy statement opposing assisted suicide. “Catholic teaching views suicide as a grave offense against love of self, one that also breaks the bonds of love and solidarity with family, friends and God,” wrote the bishops. They say people fear being kept alive past life’s natural limits “by burdensome medical technology,” but that’s when the infirm truly need the support of the community, “assistance of others to assure them of their inherent worth.”

Laura Schauer Ives, managing staff attorney with the ACLU, says this is a personal freedom issue. “This is a right and a decision that people want to be able to make.” Terminally ill people aren’t likely to use their final days to file a lawsuit to ensure their rights, she points out.

With regard to New Mexico’s lawsuit, she says, it’s not a question of morality but of clarity. The assisted suicide statute does not specify that medical treatment is against the law, she says, and such treatment is not suicide. “We’re arguing for an individual to be able to make this very personal, private decision with their physician.”

Schauer Ives predicts it might be a couple of years before the lawsuit is resolved, especially if it makes it up to New Mexico’s Supreme Court.

Do No Harm

Everyone’s heard the story: The doctors tell a patient he has six months to live, but here he is 10 years later. “There’s no question that prediction is fraught with uncertainty,” says Dr. Mangalik. “For some diseases, it’s easier to make that prediction.” Terminal illness is defined by law and by Medicare, he says, and mental competency is also defined by the courts. If the lawsuit is successful, and both requirements are met, “a doctor would be doing a legal act by writing that prescription,” Mangalik says.

It’s generally considered best practice for patients to ingest life-ending medication themselves. At Dignitas, an assisted suicide clinic in Switzerland, employees film patients taking the medication to avoid legal trouble.

For many years, Mangalik has spoken against unnecessary medical procedures performed on the terminally ill. It’s part of a spectrum of end-of-life dilemmas that includes aiding a patient’s death, he says. “Many doctors and patients say, Oh let’s try this. Oh, let’s try that. I feel that many of those treatments also lead to discomfort and the prolongation of the body.” Families demand that every possibility is pursued, and he says disagreeing with them is difficult. “The doctors—rather than explaining that this is not going to work—just do what the family wants. It’s the easy way out.”

Decisions to cease treatment—or to prescribe a lethal dose of medication when a patient requests it—shouldn’t ever be made by a single doctor, he says. Instead, several should consult to ensure that all feasible options have been exhausted. “The decision is made with due deliberation,” he says. “Nobody would just write off a patient.”

Pressures bear down on doctors and families who want to save a loved one, he says, and there’s really only one chance to get things right. “Every situation is different,” he says. “You can’t have rules or government regulation on these things. They have to be determined by discussion at that time, with that patient, with that illness.”

For decades, Mangalik says, he’s hoped to reduce the discomfort of people who are dying by enabling doctors to consider ceasing treatment. That way, patients can leave intensive care, where visiting hours are limited, and enter hospice to be with loved ones as much as they want.

Opponents of aid in dying have argued that it’s a violation of doctors’ oath to do no harm. But Mangalik says there is harm in allowing continued pain. “The Hippocratic Oath, like anybody, understands and accepts that every human being will die. Death is not the worst thing that can happen.”

My mother, Pat Manning, lived a charmed life.

When she was 16, she became the first-ever Queen of the Cody, Wyoming, Stampede Rodeo. That’s her on the right in front.

She sat in the owner’s box when Secretariat won the Kentucky Derby, met more than one president of the United States and traveled the world. She even walked away from a single-engine plane crash. Mom loved her family, antiques, and the joy and laughter of the many guests she entertained at home.

But when she was 79, she began to dwindle. No “big” diagnosis; an infection here, another illness there. Many trips to the hospital often led to days in intensive care. For three years, she kept returning home, where my sisters and brother and I were able to care for her and keep her relatively comfortable. But she was tired and often in pain. And her strong mind mourned how weak her body had become.

She was very clear with us: She did not want to live that way. As she put it, she was sick and tired of being sick and tired.

At 82, she made her final trip to the hospital. The doctors explained the situation to my sisters and brother and me: They said there was the possibility of surgery with a slim chance of benefit and a lot of drawbacks. The four of us siblings had spent a lifetime disagreeing. At any given time we could differ about anything, including the color of the sky. But my mother had told us what she wanted so clearly that we were able to speak about this in one voice to support her decision because we knew she didn’t want to live this way. There was no hand-wringing, no second-guessing.

She died very peacefully four days later surrounded by family. Her room was filled with friends until hours before her death.

I am still grateful today for the gift my mother gave me. She told us exactly what she wanted, and in return we were able make sure she died peacefully.

I didn’t realize how important — and rare — that gift really was until two years later when I came to work for Compassion & Choices. I am deeply grateful to be here, to help others give their children the same gift and to help their children return the gift by honoring their parents’ end-of-life wishes.

On Mother’s Day, I encourage you to think about the kind of gift you can give a loved one. Tell them clearly how you would want to be treated in a variety of situations, what you would prioritize if you were living with physical pain, disability, terminal illness, dementia or debilitating chronic illness. Choose a healthcare proxy and make sure they understand and support your priorities. You’ll need that person not only if you can’t speak for yourself, but to support your decisions in a crisis.

And urge the mothers in your life to answer these questions as well. Ask who they would want to make choices if they no longer could.

Here’s another photo, of Pat and Jack Manning with their first great grandchild.

This Sunday I will be thinking of my mother, everything she did for us, and particularly of her clarity in telling us how she wanted to finish her life. In honor of my mother, for Mother’s Day, I’ve made a gift to Compassion & Choices. If you’d like to do the same, click here.

To her memory, and to every mother reading this, I send my best wishes for a very happy Mother’s Day. Thank you so much for all you have given.

– Jane Sanders

By Phaedra Haywood
The New Mexican
May 9, 2012

When Aja Riggs first began experiencing what she thought were symptoms of early menopause last summer, she tried holistic remedies.

When they didn’t help, she had an ultrasound exam, after which her doctor told her she should probably also have a biopsy. In August, her doctor called to tell her she had uterine cancer.

“I thought there must be a mistake,” she said.

The doctor said the cancer was probably in an early stage and that if her uterus was removed, she would have about a 90 percent chance of survival. But when Riggs awoke after surgery, she learned that all her reproductive organs had been removed because the cancer had spread to her ovaries and lymph nodes.

On Wednesday, the 48-year-old announced she is joining a lawsuit filed by two Albuquerque doctors to clarify a state law that makes assisted suicide a felony. It seeks to clear the way for physicians to help terminally ill patients obtain prescription medication that would allow them to choose to end their own lives without the doctor having to fear prosecution.

It’s not that Riggs wants to die. She doesn’t. In fact, she’s not even classified as terminally ill — a designation meaning a person has six months or less left to live. But her cancer is rated Stage 3, and her doctor has discovered it is so aggressive that a new tumor grew even as she was undergoing chemotherapy.

“I’m in the active treatment phase, hoping to eventually get to a cure,” said Riggs, who worked as a professional organizer until last fall. “But that is less likely than that it will kill me.”

The suit was filed in Bernalillo County District Court in March by University Hospital doctors Katherine Morris and Aroop Mangalick, with legal assistance from the American Civil Liberties Union and the national nonprofit Compassion and Choices.

State law currently says, “Assisting suicide consists of deliberately aiding another in the taking of his own life. Whoever commits assisting suicide is guilty of a fourth degree felony.”

But “aid in dying is not suicide,” said Kathryn Tucker, director of legal affairs for Compassion and Choices. “People used to refer to it that way, but it’s terribly inaccurate.”

Suicide normally involves people who have a possibility of a full life in front of them but decide to cut that life short, Tucker said, often due to a mental health issue.

Aid in dying, she said, occurs when a physician writes a prescription for a lethal dose of a medication for a mentally competent, terminally ill patient, who can then choose whether or not, when and where to ingest the medication.

Patients on life support can decide to be removed from life support, the suit points out. And patients who meet certain pain criteria can ask for lethal doses of pain medication. But others don’t have the same control over their deaths, robbing them of their rights to due process and equal application of law under the New Mexico Constitution.

Tucker said most patients who choose aid in dying have been through a lot of treatment — including procedures such as surgery, radiation and chemotherapy — before making the decision to end their lives. “They’ve come to a point where there is nothing curative left, Tucker said. “If they choose to endure a little less suffering, is that suicide? No. It’s distinctly different.”

For Riggs — who has been through a radical hysterectomy, four rounds of chemotherapy, five weeks of five-times-a-week external radiation and three weeks of once-a-week internal radiation treatments, and is still in treatment — the difference between suicide and aid in dying is the hope that the treatment will work.

“I have been through a lot,” she said. “All with the goal of coming through alive, with that hope. If I get to the point where I’m terminal, if it’s no longer a choice between living and dying, it’s a choice over what kind of death.”

If it comes to that, Riggs said, “I would have more of a sense of peace of mind knowing that I have more control and more choices.”

Riggs said she believes there are different types of death, some that involve extreme suffering on the part of the patient and their loved ones, and others that are more “peaceful.”

Tucker said data compiled from the state of Oregon, where assisted dying is legal, show that more than a third of the patients who received prescriptions from physicians that would have allowed them to end their lives don’t take the medication.

“They just feel a great deal of comfort knowing [the pills] are there,” she said.

According to data compiled by the Oregon Public Health Division, the medication most often administered in aid-in-dying cases is secobarbital, a drug used to treat insomnia and relieve anxiety before surgery.

More than 50 percent of the patients who choose aid in dying have advanced forms of cancer, according to the data. About 70 percent of the patients who take the medication inform their families first, and about 95 percent of them die at home.

Riggs said she heard about the lawsuit on the radio. “I thought, this is great that they are doing this,” she said. She sent an email asking if there was anything she could do to help. She thought she might host a bake sale or stuff envelopes. Instead, she got a call from the plaintiffs asking her to join the case.

Riggs moved to Santa Fe from rural Missouri three years ago in search of a “big change” and has been studying art at Santa Fe Community College.

She said she’s had a really good life that included a supportive family and amazing friends. She’s not out there skydiving, trying to cross things off her bucket list. She has accepted the fact that she may die sooner than she imagined. And she finds more comfort in talking about the possibility than in denying it exists. But she’s not giving up.

“I’m not done,” she said. “I’m not done at all. I’m not ready to go.” She still wants to travel more. She wants to spend more time with the people she loves.

But, she said, the disease has forced her to focus more on the present moment and to revise her plans for the future. She had been saving money in hopes of buying a home one day.

“That was something I had looked forward to,” she said. “Not anymore. I’ve come to realize I’m not a homebuyer in this life. I’m probably more of a renter in this life.”

A 48-year-old Santa Fe woman with advanced uterine cancer has joined a case asking a court to clarify the ability of mentally competent, terminally ill patients to obtain aid in dying from their physician if they find their dying process unbearable. Aja Riggs, whose cancer is advanced and aggressive, joined two prominent Albuquerque physicians, Dr. Katherine Morris and Dr. Aroop Mangalik, as a plaintiff in the case. Kathryn Tucker, legal director of the national nonprofit Compassion & Choices, and Laura Ives, legal director of the American Civil Liberties Union (ACLU) of New Mexico, are serving as co-counsel in the case.

Ms. Riggs was diagnosed in August, 2011; surgery in October and subsequent developments revealed the severity and aggressiveness of her cancer. Since then doctors have treated her with radiation and chemotherapy. For much of the time she has suffered debilitating exhaustion. In December she suffered neutropenia — an immune system “crash” — requiring hospitalization.

“That experience,” said Ms. Riggs, “and the amount of pain and intensive medical treatment, has made me think: If this disease is going to take my life, I don’t want to go to the very end with it. I understand people can’t really know how they’ll feel until they actually get there. So I don’t know for sure how I will feel, as I get closer to death. But I do know I want to have the choice.”

The plaintiffs request a ruling that physicians who provide a prescription for medication to a mentally competent, terminally ill patient, which the patient could consume to bring about a peaceful death, would not be subject to criminal prosecution under existing New Mexico law, which makes a crime of assisting another to ‘commit suicide.’ The choice of a dying patient for a peaceful death is no kind of ‘suicide,’ the case asserts, and the physician does not assist such a patient in ‘committing suicide.’

“When I heard about this case on the radio it answered the dilemma I’ve been struggling with,” said Ms. Riggs. “I’ve been thinking, very seriously, about having some control over the end of my life, and I felt I couldn’t talk about it with the people closest to me. I was afraid to talk about it with my doctor. I thought if it came to choosing a peaceful death, I would have to do it on my own to keep from implicating anyone else. To end that sense of fear and isolation that people have — about one of the most important events in our lives — that’s why I think aid in dying should be an option for terminally ill patients.”

The filing and supporting declarations can be viewed here: http://CompassionAndChoices.org/Morris

MesotheliomaHelp.net
May 9, 2012

When diagnosed with mesothelioma, many patients and their families quickly learn the definition of “palliative care.”  Mesothelioma is an aggressive, incurable cancer that is difficult to treat.  For these reasons, doctors often focus the treatment plan on palliative care, as opposed to curative, and aim for relieving the symptoms and improving the patient’s quality of life.

However, according to a survey sponsored by the Center to Advance Palliative Care and the American Cancer Society, 70% of the adults surveyed indicated they were “not at all knowledgeable” about palliative care, and another 8% had never heard of the term.  Even non-palliative care physicians are not fully aware of what palliative care offers patients.

Can this be good? According to Dr. Diane E. Meier, director of the Center to Advance Palliative Care and professor of geriatrics and internal medicine at Mount Sinai School of Medicine, New York, the lack of knowledge about palliative care offers a huge opportunity to educate the public and to increase the number of palliative care medical specialists.

In a presentation at the annual meeting of the American Academy of Hospice and Palliative Medicine, Meier stressed that now is the time to educate physicians as well as the general public that palliative care is “actually about relieving the pain, symptoms, and stress of serious illness in patients of any age and at any stage of disease, and that palliative care can be delivered alongside curative or life-prolonging therapies.”

After the survey participants were educated about palliative care, 95% of those surveyed said it’s important for patients with serious illnesses and their families to learn about palliative care.  Further, 92% of them admitted that they would likely consider palliative care for themselves and loved ones when needed.

Dr. Meier and her colleagues believe a nationwide campaign to educate Americans of the importance and effectiveness of palliative care will create a demand for palliative care, thus requiring a “big boost” in the workforce.   Meier believes the current staffing level of palliative care specialists is so small “as to constitute a major barrier to access.”

To affect change in the perception of palliative care, and to grow the workforce, Meier and others are seeking funding for a 5-year, multimillion-dollar social marketing campaign to increase public awareness regarding palliative care.  Meier points out that there is one oncologist for every 145 cancer patients, and one cardiologist for every 71 myocardial infarction patients, but there is just one palliative care specialist for every 1,300 people with a serious illness.

The American Society of Clinical Oncology (ASCO) released new guidelines in 2011 regarding palliative care.  ASCO encourages physicians to discuss a patient’s treatment options and preferences, including end-of-life care, immediately after their terminal diagnosis so the treatment can be individualized from the start.  The patient will better understand how palliative care can be used as a complementary treatment option with chemotherapy or radiation, or as the last step in their care.

When stricken with pleural mesothelioma, patients and their doctors continually struggle to keep the patients’ lungs free of fluid while trying to shrink the tumors that constrict the lungs and limit the patients’ ability to breathe.  Palliative care treatment is intended to control pain, stop bleeding, and relieve pressure, while chemotherapy focuses on limiting tumor growth.  For many mesothelioma patients, palliative care offers them an opportunity to stay out of the hospital and spend more time with their loved ones.

By Dike Drummond, MD
KevinMD.com

The ambulance crew rolled him into my ER breathless in his pajamas, O2 mask on his face, gasping for air, his short cropped hair a mess, standing straight up. Eugene was what the staff called a “frequent flyer.” As the nurse injected some IV Lasix I reviewed his chart to find a classic downward spiral.

It was a busy evening. The bays were full of the usual cuts, broken bones and chest pains, the waiting room with snotty noses and chronic pain patients hoping for a refill from the new kid in town. I was a freshly minted family practice doctor taking a year after residency in this rural California emergency room to take a break, get some experience and make a little money.

I came to call this “a MASH Unit in reverse.” We had no on-site surgery. It was my job to keep the life threatening cases alive until the helicopter arrived to take them to the trauma center a 40 minute flight to the south. In MASH they flew the wounded in.  Here my job was to keep them alive until we could fly them out.

I had vowed that no one would die in my Emergency Room if I could help it.  Until I met Eugene and Mary Ann.

She was a stark contrast to Eugene. Looked like she had just finished dressing to go to church on Sunday morning: immaculately pressed with perfect hair and her knitting in hand. She had obviously been here before. It was clear from the first second I laid eyes on her that she adored her husband of 56 years. Despite the mask and the respiratory distress, I could see the same love for her in the old man’s eyes.

This was his 6th visit to the ER in the last 18 months. He had a bad heart and it didn’t take much to throw him into pulmonary edema despite 14 pills and over $200/month in medication. On a good visit he spent 4 days in the hospital getting his meds adjusted. On a bad visit he was on the ventilator for 3 days and in the hospital for 10. Each time he emerged weaker. Lately he was wheelchair bound and Mary Ann had learned to deal with adult diapers and getting him around the house. This would be one of the good visits.

I sat down with them once his breathing was easier and asked, “How are you feeling about the quality of your life lately?” Mary Ann wiped some tears as Eugene told me how miserable he was, how much he hated being a burden and what a good life he and his wife had in days past.

None of us said anything for a while. Mary Ann set her knitting aside and sat as close as she could to the bed. They held hands – as the nurses said they always did.

“We can keep giving you medicine and even putting you on the breathing machine if you want, and here is what I am afraid of. It is only a matter of time before you won’t be able to get off that machine. When that happens Mary Ann will be faced with the decision of whether or not she tells the doctors to turn the machine off. I am pretty sure none of us want to put her in that position if it can be avoided. It sounds like you have been pretty miserable lately and you are getting weaker as time goes by.

I want you to know that each time you come in on the Ambulance is potentially the natural end of your life. We are stopping that with our medicines. If the two of you want, we don’t have to do that. If you two have a discussion and decide you would like the next time you come in to be the natural end of your life, and I am in the ER when you come in, I can help that happen for you.”

He was breathing easier. We switched him to the nasal cannula and his sats held. I left the room and let them talk about this new option for a few minutes.

When I returned she was standing by the bed. Eugene spoke. “We want you to help us do that doctor.” I looked them in the eyes and nodded. Both of them were crying in a way that I knew the foundation for their emotions was love – the love everyone sensed when in their presence.

I had them fill out his Living Will and No Code paperwork. Everyone wished them well as they were wheeled to the medical ward. Before the end of the shift I huddled with the staff and told them the plan, secretly hoping – and dreading – I would be on staff the next time.

6 weeks later, at 10PM on a Saturday shift, the call came in. Eugene was on his way. Severe respiratory distress. Rales to the apices. O2 mask in place.

We wheeled him into the room with Mary Ann holding his hand. Eugene was barely able to maintain his consciousness, panting with blue lips. They immediately recognized me. I looked at each in turn. They both nodded and quickly looked away. I gathered the staff and told them what we were not going to do, pulled the curtains around the bed, and held Mary Ann’s free hand.

The noises of the ER receded to a background hum. Mary Ann stroked his forehead as his breathing worsened. She gripped my hand, looking up to me from time to time.

It only took 10 minutes for Eugene to die. At the point of his last breath — we witnessed his passing — that span of seconds when we could sense his spirit leaving, almost see it happening. Joy, memories, love, grief, pain, longing for more time, relief that it was finally over, the last goodbye, filled the room.

Mary Ann was so happy, so sad, so intensely remembering all they had shared. We hugged. She thanked me and everyone on the staff.

Bittersweet doesn’t come close to the taste of that evening. Holy, sacred, the end of a life well lived and a relationship we all aspire to.

I stepped out into the full blast of the sights, smells and sounds of my next patient and the remaining 10 hours of my shift.

Eugene was the only patient I lost in the ER that year.