End-of-Life Choice, Palliative Care and Counseling

Posts Taggedend-of-life consultation

When Prolonging Death Seems Worse Than Death

October 9, 2012

Many of us think of death as the worst possible outcome for a terminally ill patient, but Judith Schwarz disagrees.

Schwarz, a patient supporter at the nonprofit Compassion & Choices, says prolonging death can be a far worse fate. For many patients, good palliative or hospice care can alleviate suffering, yet “a small but significant proportion of dying patients suffer intolerably,” Schwarz says.

Based in the New York area, Compassion & Choices is an organization that helps terminally ill patients and their families make informed and thoughtful end-of-life decisions to hasten a patient’s death. These decisions are not made impulsively, Schwarz tells Fresh Air‘s Terry Gross. “Nobody makes this choice unless the burdens of living have so consistently, day after day, outweighed all benefit.” More

5 Reasons I Won’t Die the Way My Mother Did

By Erica Manfred
Next Avenue
September 21, 2012

When a parent dies, it’s common for surviving children to have a raft of regrets, from not spending more time with Dad to not telling Mom you loved her to failing to do more for them in their final years. Today there’s often one other regret in the mix — not protecting a parent from invasive end-of-life interventions.

Few of us die in our own beds now. Modern medicine keeps many of us living longer, and then some of us die by inches, in an ICU or on a ventilator, sedated or in excruciating pain, while others fade slowly with Alzheimer’s disease or other dementias. When my mother died 15 years ago, after much unnecessary suffering, I determined to keep her fate from becoming mine.

Mom was an extremely healthy and active woman who, until age 85, had few medical problems besides arthritis. In her mid-80s she displayed some memory loss, though nothing that inhibited her lifestyle. I suspected she was developing Alzheimer’s, as her brother had, but that she had many active years left. She also had a heart valve that needed replacing or she’d face serious restrictions of her daily activities, along with an increased likelihood of a heart attack.

She wanted the surgery, and it was a success. But then she had an allergic, near-fatal reaction to the valve, after which she went rapidly downhill cognitively and became unable to take care of herself and severely depressed. Two years later, when her kidneys failed, her doctor suggested dialysis, which would have gone against her living will specifying no further invasive treatments. I arrived at her Florida home just in time to refuse the dialysis. She died peacefully at home, under hospice care, two weeks later. We had spoken about her wishes, and I knew that’s what she wanted.

After my mom passed away, I realized that I had to begin to make hard decisions about my own death, when I was still relatively young and healthy, to avoid an equally drawn-out end. Jane Brody, a New York Times health columnist and author of Jane Brody’s Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare Medically, Legally, and Emotionally for the End of Life, helped me craft these five steps, designed to increase one’s chances of a dignified death (although there are, of course, no guarantees): More

Steve Lopez: End of life case in New Mexico may affect California

By Steve Lopez
Los Angeles Times
August 14, 2012

There’s no way to predict when or if California will offer what’s known in Oregon and Washington as Death with Dignity, or physician-assisted aid in dying, but I’ll keep you posted on a case in New Mexico that could have implications here.

In the New Mexico case, said Kathryn Tucker, legal affairs director for a nonprofit advocacy group called Compassion & Choices, “We hope to clarify … that a vague statute that makes a crime of ‘assisting suicide’ does not reach the conduct of a physician providing aid in dying, because of course the choice of a dying patient for a peaceful death is not, and ought not be conflated with, ‘suicide.’”

Tucker said the case in question involves a woman with advanced uterine cancer who has said she would like to have, as one option, the right to avoid prolonged suffering by obtaining doctor-prescribed medication she could ingest to bring about a peaceful death if she finds her dying process unbearable.

ucker said California’s statute on assisting a suicide is similarly vague, and if the New Mexico court rules in favor of allowing aid in dying, “it could have persuasive influence in California.”

To learn more about the legal and medical issues on this topic, go to www.compassionandchoices.org and check my video chat above with Tucker and Dr. Judy Neall Epstein, director of the End-of-Life Consultation Program at Compassion & Choices.

Tragedy Calls Out for Support at the End of Life

Kailua, HI – Compassion & Choices Hawaii, an affiliate of Compassion & Choices, the nation’s oldest and largest nonprofit organization working to improve care and expand choice at the end of life, today responded to the tragic death by gunshot of an elderly couple in Hawaii Kai. Complete facts about this tragedy have not come to light, but what we know fits an unfortunately common pattern. Too often the lives of a loving couple end in violence, as one shoots the other in despair. Unable to live with what they’ve done, they immediately turn the gun on themselves.

Many elders see few options as illness advances and bodily functions deteriorate. Yet options always exist that are preferable to violence and premature death. Death remains a taboo subject in our society, so elders feel they cannot speak openly about situations where they might deem death preferable to a deteriorating and declining quality of life.

“No one, no matter what their condition, should feel they have to resort to violence when confronting advanced illness,” said Dr. Robert “Nate” Nathanson of Waialua, Hawaii. “Patients and their caregivers need to feel safe talking about unbearable symptoms and their feelings of desperation.”

People in Hawaii have many options as they approach the end of life, if they contact a knowledgeable and sympathetic listener. “The fact is that an honest conversation can often prevent a tragedy,” said Dr. Nate, “by leading to respite care, hospice, pain control, counseling or other forms of support.”

Since 1993, Compassion & Choices’ End-of-Life Consultation program has served thousands of clients, helping them find alternatives to violence. Peaceful, gentle means always exist to end life in a way that honors the life lived. The purpose of Compassion & Choices’ End-of-Life Consultation program is to ensure excellent end-of-life care and, if that care does not relieve unbearable suffering, provide information on a client’s options for a peaceful, dignified death. Individuals seeking information about end-of-life decisions can access Compassion & Choices Hawaii’s End-of-Life Consultation service by calling 1-800-247-7421.

New Medicare Regulations Empower Patients

New Medicare regulations to take effect January 1 will include a provision physicians, social workers and families pushed for. The New York Times reports:

Under the new policy, outlined in a Medicare regulation, the government will pay doctors who advise patients on options for end-of-life care, which may include advance directives to forgo aggressive life-sustaining treatment.

In truth, the consultation is not about forgoing treatment, as advance directives are equally suited to requesting life-sustaining treatment. Thus, this Medicare enhancement simply encourages communication, promotes choice, compensates doctors for important care and empowers patients.

The AP explains:

The provision allows Medicare to pay for voluntary counseling to help beneficiaries deal with the complex and painful decisions families face when a loved one is approaching death.

Experts on advance directives have stressed the importance of discussing end-of-life options before patients and families become vulnerable in a crisis. The Washington Post last year hosted an online discussion with executives from Gundersen Lutheran Hospital of LaCross, Wis., to discuss end-of-life care. A pioneer in the field, Gundersen has urged this Medicare compensation for physicians who consult with patients on end-of-life planning.

With a chance to plan with their personal physician, some patients might decide, if they become terminally ill or permanently unconscious, they’ll want a peaceful death with as little intervention as possible. Others will decide to utilize every kind of life-sustaining therapy as long as medically possible. The conversation protects either decision. These conversations empower patients and make sure that their wishes are heard.

With the new regulations, Medicare will now compensate physicians for that consultation. Why is reimbursement important? When physicians are asked why they do not regularly engage in advance care planning with their patients, they report that they do not have the time for such conversations.

As Muriel Gillick wrote last year in the Boston Globe,

Survey after survey indicates that most patients want to have end-of-life discussions but most do not have them.

Most people believe individuals themselves are the best decision-makers when it comes to these very personal, private healthcare choices. In November, 2005, the Pew Research Center found a whopping 84% of Americans approve of letting patients themselves decide about extraordinary treatments to prolong life.

Re-enforcing your decision by discussing it with your doctor makes it more likely your wishes will prevail. Solid research shows that people who talk with their doctor about end-of-life wishes are more likely to have those wishes honored, and more likely to experience a peaceful, pain-free death when the time comes.

Even patients with a living will benefit from consulting with their personal physician. Laws vary from state to state. Having specific documents in order may be necessary to make sure your wishes are carried out and that the loved one you choose is empowered to act on your behalf.

As Kristina Chew writes at Care2:

But without any end-of-life planning, patients are left to the mercy of others [when they cannot] speak up for themselves. They have no control at all about what happens to them, with health care decisions left to whoever has power of attorney.

When seniors tell their doctor what treatments they would want or not want in a given situation, they protect their families from struggles over decisions about life-sustaining treatment if they became unable to speak for themselves.

This improvement to Medicare is a long-awaited response to those families who didn’t know their loved ones’ preferences when confronted with difficult decisions in an emergency. With the coming of the New Year, Medicare will begin empowering seniors to consider the care that is right for them when they face the end of life, and better ensure their wishes control the care they receive.