Tag: Advance Directives

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California tests electronic database for end-of-life wishes

Mary De Freze, 81, has heart problems, chronic lung disease and a history of falling. At the end of her life, De Freze said, “I don’t want to be in a lot of pain and I don’t want to be kept alive by machines.” Stonebrook Healthcare Center staff helped her put those wishes on a Physician Orders for Life-Sustaining Treatment form. An effort is underway to create an electronic registry of the forms so emergency responders can quickly access them regardless of where patients are.

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Mary De Freze, who has heart problems, chronic lung disease and a history of falling, knows she may not have too many years left. And she’s clear about what she wants — and doesn’t want — at the end of her life.

“I don’t want to be in a lot of pain and I don’t want to be kept alive by machines,” said De Freze, 81.

After a recent fall landed De Freze in Stonebrook Healthcare Center with cracked ribs and a bruised spleen, the staff there helped her put those wishes on paper.

The document they used, Physician Orders for Life-Sustaining Treatment, or POLST, gives patients a choice of how much medical care they want in an emergency.

Prompted by a state law that took effect this year, a coalition of emergency and social service providers is working to create an electronic registry for POLST forms so they will be available to first responders and medical providers when they are needed. The group is starting with a three-year pilot project in San Diego and Contra Costa counties that could serve as a model for a single, statewide registry. Paper-based POLST forms are used across the nation, but electronic registries exist only in a few states, including Oregon, New York and West Virginia.

Many adults have advance directives, which are legal documents that designate a surrogate decision-maker and list patients’ health care preferences. POLST forms go further, creating a set of medical orders that are signed by the provider and the patient or a legally recognized decision-maker. Unlike advance directives, they are specifically designed for people who are already seriously ill or near the end of life.

Research shows that POLST forms help ensure patients’ end-of-life wishes are followed. But that only happens if doctors and other emergency providers can get them quickly. In California, the POLST form is a paper document and might not be at hand when patients need it. In many situations — a heart attack, a stroke or severe dementia — patients may not be able to communicate. And doctors may not be able to reach their families right away.

FOLLOWING WISHES

Without information on what patients want, there is an increased chance their wishes won’t be followed.

“If you take the time to fill out a POLST form, you want your health care wishes to be known and respected,” said Kate O’Malley, a senior program officer at the California Health Care Foundation, which is funding the pilot project in California.

A POLST registry “would be a big plus for being able to give people the care they want and not give them the care they don’t want,” said Jeffrey Klingman, a neurologist at Kaiser Permanente in the East Bay.

“I don’t want to do things to people they don’t want done,” he said. “On the other hand, I don’t want to delay treatment while I wait to figure out what they want done.”

Oregon was the first state to use POLST forms in 1991. California has been using them for nearly 20 years. Filling out the forms is voluntary, but once they are completed and signed, they must be followed, and providers have immunity from criminal prosecution or civil liability when they do so in good faith. The forms are printed on bright pink paper and include decisions such as whether a patient should be resuscitated, admitted to the intensive care unit or have a feeding tube inserted.

Tony Chicotel, a staff attorney at California Advocates for Nursing Home Reform in San Francisco, said patients should document their wishes in advance but that there are some downsides to doing so only with POLST forms. They are not nearly as thorough as advance directives and don’t allow you to designate a decision-maker, he noted. “The most comprehensive health care planning you can do is to name an agent.”

In addition, Chicotel said many nursing home residents are being urged to complete POLST forms even if they aren’t seriously ill or at the end of life. He said if an electronic registry is created, it should also include advance health care directives.

California’s electronic registry would be a secure, cloud-based portal for medical providers to submit and view POLST forms, regardless of whether the patient was at home, in the hospital or at a nursing home.

A ‘NO BRAINER’

An electronic registry is a “no-brainer,” said Judy Thomas, CEO of the Coalition for Compassionate Care of California, which coordinates the state’s POLST program. But implementation will be much harder because it will require the cooperation of state agencies, doctors, emergency personnel, and private and public health systems. Success will also depend in part on hospitals’ willingness to share records.

“We are not asking all health systems to share all information,” said Allen Namath, co-founder of Vynca, the technology vendor for the project. “But the value in these forms is being able to share them.”

Patients who go through the trouble of documenting their medical preferences shouldn’t have to worry about getting the wrong care, he said. “It is not a cardiology problem. It is not a cancer problem. Helping improve our end-of-life care … applies to everybody.”

San Diego County already has a health information exchange that allows hospitals and health systems to share some data. But Contra Costa County is further behind.

“It’s going to be challenging,” said Donald Waters, executive director of the Alameda-Contra Costa Medical Association, which is helping lead the pilot project.

But Waters said it’s worth the effort to overcome the hurdles because having documents uploaded means paramedics and others will know in an instant if patients want to be resuscitated or just kept comfortable.

Situations arise every day in which being able to access POLST forms electronically could improve end-of-life care, said Tom Sugarman, an emergency physician at Sutter Delta Medical Center in Antioch.

“If you come [to the hospital] in full cardiac arrest … we only have one or two minutes to make a decision,” said Sugarman, who educates doctors about POLST. “All physicians are going to err on the side of preserving life.”

Sometimes, however, a patient may prefer comfort care, Sugarman said. A POLST form — if it is available — means families don’t have to make decisions during an emergency, he said. “The worst time to have that conversation is during a crisis.”

FORMS CLOSE BY

At Chaparral House, a nursing home in Berkeley, the POLST forms are in the residents’ folders at the nursing station. The forms go with patients to the hospital, but sometimes there is still a disconnect. Administrator KJ Page recalls one resident getting a feeding tube when he didn’t want one and another who almost underwent bypass surgery against his wishes.

Audrey de Jesus, 83, arrived at Chaparral House just a few months ago. She uses a wheelchair and an oxygen tank. Beside her bed sits a Bible and a book of Psalms.

De Jesus has seven children and said the form tells them exactly what she wants — comfort-focused treatment — so there aren’t any questions in an emergency. “I want pain control and the least suffering for my family,” she said.

Stonebrook Healthcare Center Social Services Director Shirley Jackson said filling out POLST forms is part of the admission process. “It’s almost like a driver’s license for the end of your life,” she said. “It’s important.”

Having the form available electronically would make it much easier for everyone. “If, God forbid, you have to send somebody out in an emergency, especially if they are unresponsive, it’s right there in the chart,” she said.

De Freze, a former certified nursing assistant, said she plans to put her pink form on her refrigerator when she leaves Stonebrook. She knows she could have an emergency and may not be able to tell doctors or paramedics what she wants.

“You can’t communicate if you are in excruciating pain,” she said.

Complete Article HERE!

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Doctors slow to have end-of-life conversations

Advance care planning is becoming more popular among patients.

By Kay Manning

[W]hen the concept of paying doctors to help patients plan for end-of-life care first came up as part of health reform, opponents thumped it as a step toward “death panels” and “pulling the plug on grandma.”

Advance care planning was scuttled then, but seven years later, it has been rather quietly incorporated into services reimbursable by Medicare. Patients now can seek guidance from their physicians and other health care professionals about what they want and don’t want in terms of life-sustaining or life-prolonging care and have it included in their medical records.

But codifying what many describe as a sea change in thinking may have come about too quietly. The Centers for Medicare and Medicaid Services, known as CMS, can’t say how many physicians have billed for these conversations since the provision took effect Jan. 1, but a poll released in April showed only about 14 percent of doctors who regularly treat patients over 65 have submitted such bills to Medicare.

While that indicates physicians either don’t know about ACP or are hesitant to engage in such conversations, said Angela Hult, executive director of Oregon-based Cambia Health Foundation, one of three poll sponsors, the public is very solidly in favor.

The California Health Care Foundation, another sponsor, found in a 2012 survey that 80 percent of respondents said it would be important to talk to doctors about their final wishes if they were seriously ill, and 60 percent said it was “extremely important” that their families not be burdened by tough decisions, like stopping nutrition or breathing assistance.

ACP, also called end-of-life directives, is gaining steam among nonprofits, foundations and academic institutions focusing on patient-centered care that also can help health systems be more efficient and save money. Books such as best-seller “Being Mortal” by Massachusetts surgeon Atul Gawande, and “Hope for a Cool Pillow” by Illinois anesthesiologist Margaret Overton use personal experiences to advocate for change in health care of the elderly and raise the profile of what all families eventually face but few typically talk about before a crisis.

Planning ahead instead of guessing what a loved one would want, which can cause emotional rifts in a family even as time is of the essence, serves both patient and caregivers. A 40-year nurse, commenting in a blog post about the absence of ACP wrote: “It has been the cause of severe moral distress among my nurse colleagues in the ICU and the source of many personal nightmares over the years. It is so very frightening to think what we do to the elderly, in particular,” by mustering medical technology to prolong life when that might not be desired.

Physicians even have a term for it — the luge ride, said Michael Preodor, a palliative care doctor at Advocate Lutheran General Hospital in Park Ridge.

“It’s more surgery, more disease intervention, without fixing the problem,” Preodor said. “The key to helping is to align our care with what the patient desires, and that’s dependent upon having these conversations.”

He recently had a patient with a sudden spinal injury and infection that a number of specialists gave opinions on how to treat, overwhelming his wife. She wanted the advice of her trusted family physician and because of the ACP reimbursement, she was able to have several conversations about what to do, deciding on comfort care in hospice, Preodor said.

“I have no doubt he’d be in the ICU, having surgery or other interventions with more and more suffering regardless of the outcome,” Preodor said. “Now there’s time for closure, time with family free of pain, time to deal with dying, which we don’t do very well in this country.”

Gundersen Health System in La Crosse, Wis., has been working more than 20 years to change that. Bud Hammes, an ethicist who started the Respecting Choices program that is cited by many as a model for advance care planning, said more than 96 percent of the 120,000 people in La Crosse County have plans in place before death on how they want to be treated as their health declines. Talking about death is a part of community conversation and happens in clinics, hospices and nursing homes, guided by specially trained personnel, he said.

“Patients have plans that go from very aggressive treatment to comfort care,” Hammes said, eliminating what he called the “terrible dilemma” of families trying to do the right thing but not knowing their loved one’s wishes. “They come to the self-realization of why they need to do this very challenging activity.”

The focus on ACP also has saved Gundersen money. The number of days a patient spent in the hospital in the last two years of life was a national average of 20.3 in 2010, but only 9.7 at Gundersen, according to The Dartmouth Atlas of Health Care, and the total cost of care in those two years was a national average of $79,337, but just $48,771 at Gundersen.

Hammes sees Medicare’s approval of ACP as a “positive step forward that indicates a policy shift from when no one talked about this.” Physicians can bill for 30 minutes of conversation about advance directives with patients, family members or surrogates and be reimbursed $86, which drops to $75 for a second such conversation. CMS has yet to promulgate guidelines for the conversations but has stipulated that while physicians must “meaningfully contribute” to them, other professionals such as RNs and physicians’ assistants can conduct them. And starting in 2017, ACP can be part of an annual Medicare wellness visit.

Ironically, while Hammes supports Medicare’s move to reimbursement and is working with others on ACP training, physicians in the Gundersen system will not seek to be paid for these conversations because of internal billing issues and what they perceive as too little time allowed given the complexities of the issues, he said.

Other possible impediments to full participation by physicians across the country include lack of preparation and clarity on what constitutes an ACP conversation, said Dr. David Longnecker, who co-chairs a committee with the nonprofit National Quality Forum to improve advanced illness care. He suggests simulations, such as are used for training in other parts of medicine, to ease doctors’ discomfort with the topic, community input to adjust for faith and culture concerns, and adoption of ACP by health systems instead of just individual doctors.

“The enemy of good is perfect,” Longnecker said. “We have to start somewhere.

“We don’t want ‘yes, doctor,’ but partnerships (between patient and physician), which are essential to delivering a high quality of care,” he said.

Cambia Health Foundation is building on its poll results with nationwide focus groups “as a deeper dive into what are the barriers to ACP, how do we educate and engage physicians, what tools do they need to have these conversations,” Hult said.

“The conversations are so important for end of life, but also for chronic or life-limiting illnesses. How do we ensure that each person receives what they perceive as quality of life?” she said. “It makes all the difference in approach once you understand the patient is the center of care.”

The Conversation Stopper poll showed 75 percent of 736 physicians surveyed in 50 states believe they are responsible for initiating ACP talks. But if they don’t, a nonprofit, The Conversation Project, offers tips on how patients and family members can broach the subject, decide what they want to accomplish and ensure their plan is followed.

The Conversation Project, co-founded by author Ellen Goodman, implores people not to wait until there’s a crisis.

“It always seems too early … until it’s too late,” say its guidelines, which also suggest: Tell your physician you want to talk about end-of-life wishes. Share any experiences that are shaping your thinking. Ask questions about medical problems, such as ‘what is my life likely to look like six months from now, one year from now, five years from now?’ Probe options for care and how they may affect your independence, and ask what you can expect if you do nothing. Request that your wishes be documented and included in your medical record.

Overton, whose book “Hope for a Cool Pillow” is named after the simple but caring gesture of flipping a pillow for patients, grew up in a family where death and dying were discussed, she said, so she didn’t realize it wasn’t common until she became an anesthesiologist.

“I just want to get people talking, to take the fear out of it,” said Overton, who works at Advocate Lutheran General Hospital. “Having a conversation when you’re not stressed … have a coffee, a lemonade, a glass of wine … those are ideal times.

“Typically, doctors don’t know you as well as your family, your values, what you want. When family is part of the decision or knows what the individual wants, there is an element of empowerment. If people are clear about what they want, it’s hard to override that, and physicians are more likely to get on board,” she said.

Complete Article HERE!

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What matters most at the end of life?

By Rabbi Bonnie Koppell

what-matters-most-at-the-end-of-life

On July 14, 2014, my husband David and I sat down with our children to disseminate and discuss our health care advanced directives. It was David’s 69th birthday; he died about 2 months before his 70th.

David had endured several years of ill health, culminating in the removal of a kidney. In June, the month prior, we learned that the cancer had metastasized to his bones.  As a couple, we wanted to make sure that all of the children understood our desires for end-of-life care. Thankfully we had had the foresight to discuss a broad variety of medical treatment options dispassionately, years before there was any urgent medical necessity.  Suddenly those decisions became radically more real.

For 10 months, David endured two different rounds of chemotherapy, neither of which had the desired effect of stopping the cancer that was destroying his bones and causing unimaginable pain. He persevered through the agony of trying to move while his bones were crumbling. Radiation impacted his ability to swallow and to enjoy food, which became a non-option when he had a feeding tube inserted. We watched him fight and waste away, fight and waste away, yet always with the hope that one more treatment would be successful where others had failed.

We had talked about nutrition and hydration at the end of life, about ventilators and surgical intervention in the face of terminal illness, but we had not addressed the fundamental question that The Conversation Project urges us to consider: “What matters to you most at the end of life?”

Dr. Atul Gawande, author of “Being Mortal: Medicine and What Matters in the End” and a leading thinker about the role of the medical profession in caring for patients whose time is limited, reminds us that people have a broad variety of concerns besides prolonging their lives.

Doctors are trained to view death as the enemy and to battle on until the end.  At some point, the battle was lost. Among David’s final words were, “Why didn’t he (the doctor) tell me it was so bad?”

Gawande writes that, while there is nothing wrong with sustaining hope, it is problematic if it prevents us from preparing for the more likely outcome.

He writes, “We’ve created a multimillion-dollar edifice for dispensing the medical equivalent of lottery tickets – and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.”

The Conversation Project is an important first step in considering what we each might value most if we have the luxury of knowing that our time is limited. What would be a good enough day to want to go on, and what is the tipping point where we would be ready to let go? The answer will be different for each of us, and we must have the conversation now.

David felt loved until the very end; he enjoyed the best possible support from friends, family and community. And, I wish that we had had more time to lay down our swords, to cease the raging battle, and to have quietly enjoyed more the time with which we were blessed.

Our culture is changing and growing and learning. The Deutsch Family Shalom Center at Temple Chai recently hosted more than 100 individuals who courageously undertook the first steps to have “the conversation.”

At 10:30 a.m. on Sunday, Jan. 8, we will gather to share our experiences and address other concerns as we move forward in these challenging and uncharted waters. Attendance at the first gathering is not required.

What a gift to our family and loved ones to ensure that our financial affairs are in order, our burial arrangements are understood, and to have articulated our answer to that question, “What matters to me at the end of life is…”

Complete Article HERE!

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A united family can make all the difference when someone is dying

Siblings Elizabeth H. Moore, left, Samuel P. Harrington, Hannah H. Graziano and Jane H. Coble worked together to fulfill their father’s goal of dying at home.
Siblings Elizabeth H. Moore, left, Samuel P. Harrington, Hannah H. Graziano and Jane H. Coble worked together to fulfill their father’s goal of dying at home.

By Samuel Harrington

The blessings and curses of families are not limited to holiday gatherings, graduations, weddings and funerals. They also exist at the transition of the matriarch or patriarch from life to death.

Like many elderly Americans, my father wanted to die at home. He was clear on that point. But also like many elderly Americans, he gave mixed signals about what treatment he would accept or decline with that goal in mind.

So when at age 92 my father began his decline from aging with grace to decaying from old age several years ago, my sisters and I began creating a plan that would allow him to reach the end as he wished.

First, we reinforced his household help. Then we scheduled a series of periodic days-long supportive, reconnaissance visits. (None of us live near him.) My father told us that he did not want to be resuscitated if he collapsed. But how should we deal with a nonfatal emergency without losing him to overly aggressive care? Would it be possible, in fact, to do nothing?

My siblings deferred to me, the only physician in the group, for medical advice. My oldest sister was the first to visit his apartment in our new rotation. Knowing his desire to die at home, she was anxious about what she should do if something happened, and she peppered me with questions.

“What should I do if he falls and hurts himself?”

“If he is in pain, call 911, then call me.”

“What should I do if he seems to be having a stroke?”

“Call me. And if you can’t get me right away, call 911.”

“What should I do if he gets pneumonia?”

“Call me.”

“What if I find him dead in bed?”

“Wait until he is cold and blue, then call 911.”

“Okay. I get it.”

After digesting my responses and discussing them with our two other sisters, she typed up a plan that carefully explained our reasoning. She (or whoever was visiting) was to call for help if our father was in pain. Whoever was in attendance was not to take action about other medical problems until I had a chance to weigh in.

Most families are not as united as my sisters and I were around the concept of a painless death at home. If the opportunity for such a death arose, we would seize it. This is what his advance directive stipulated, and it is what he frequently verbalized. “I have lived too long” and “I want to wake up dead” were his mantras. We wanted to honor his wishes.

Participation in the slow decline of an aged parent comes with obligations. There are dues to be paid — for example, showing up regularly for visits, no matter how inconvenient, and taking time to check in with siblings and provide detailed updates. Teamwork, coordination and cooperation help smooth this emotion-wrought journey. When family members do not or cannot work through disagreements, the result can end up punishing the person everyone is trying to comfort and protect.

Unfortunately, my experience as a physician and hospice trustee has shown me, an odd sort of competition can crop up in these situations. Some patterns are predictable. The most common is when siblings compete to prove who cares the most. This is frequently seen upon the arrival of an estranged family member at the deathbed, and it has been described in medical journals as “The Daughter From California Syndrome.” Classically, the syndrome unfolds as the guilt-ridden newcomer urges overly aggressive treatments.

Other patterns are less predictable. In some families, a previously restrained sibling will assert dominance as the designated agent or proxy with power of attorney for health care. That one child has been designated as health-care proxy is not to be envied or taken as a sign that he or she is preferred over another.

Sometimes a financially successful sibling will dominate the decision-making, thinking that the managerial skills that built their business will now translate into medical decision-making ability.

Frequently, religious schisms will arise. I have seen, for example, one sibling’s conservative religious belief that the patient should fight on compete with another one’s new age spirituality urging everyone to “let go.”

The fault lines in decision-making that result from any of these scenarios will prolong some aspect of the dying process, usually to the detriment of patients like my father who have asked for a non-medicalized death at home.

Even though a single person (the competent patient or the health-care proxy for an incompetent one) has the technical responsibility and authority to make difficult medical decisions, the choice to accept or decline a high-risk procedure — such as heart-valve replacement or emergency surgery — is usually the result of a discussion among family members during or after a consultation with the treating physicians.

This is because these discussions most often involve a sick, weak, impaired elderly parent or grandparent and a de facto family committee. It is the rare physician who will exclude family members from a consultation and limit the discussion to the one with power of attorney. It is rarer still for a physician, in the heat of urgent care, to parse the advance directive signed by the patient specifying what they do — and don’t — want if an agitated family member is demanding action.

Doctors are most comfortable proceeding with a high-risk treatment or withdrawing life-sustaining technology such as a mechanical ventilator when the family is unified. On the other hand, if the family is fragmented, doctors are more likely to move the conversation toward, and then proceed with, what they think is “best.” Often this will be an expedient combination of what is medically acceptable, legally conservative and reflective of the doctor’s best interpretation of the family’s majority opinion, even if it defies the patient’s wishes. What the doctor thinks best will also likely be influenced by his or her own end-of-life philosophy.

I have seen many families unable to come to agreement. I have seen many patients overtreated or undertreated in defiance of their wishes. I have seen agonizing scenes of dysfunction, such as a son demanding that cardiac resuscitation be performed on his just-deceased mother. This situation occurred because the mother did not include him in her final conversation with physicians, when she changed her status from “full code” — which had instructed them to intercede if her heart stopped or she stopped breathing — to “do not resuscitate.”

Although my family was in good agreement about my father’s wishes to die at home and to take no measures to prolong his life, our tools were limited. He was not yet a candidate for home hospice — that requires a life expectancy of six months or less — and a new type of very specific advance directive (called a POLST order) was unavailable to him.

In the absence of such orders, I could think of various scenarios that would test our teamwork and resolve.

What if our father developed exceptionally upsetting symptoms such as seizures or massive bleeding from the bowels? What if he became unmanageably delirious? What if the “need” for emergency surgery arose because of a bowel obstruction or a fall with a major fracture?

Would the pain compromise his resolve to use such an acute medical problem as an “exit strategy,” a way to die naturally? Would one of us become ­guilt-ridden about our “active passivity” regarding medical intervention? At the very end, the inability to “let them go” is a common development.

Fortunately for my siblings and me, there were no dramatic decisions to make in the two years between our first family consultation and my father’s death at age 94. A year before his death, he had stopped seeing his physicians for checkups. Six months before his death, he enrolled in home hospice, and three months before the end, he stopped taking his non-palliative medications (blood pressure pills, cholesterol lowering pills, water pills, potassium supplements).

“This will be our last visit,” my father said as I kissed him goodbye and left for the airport following a 10-day visit. He was prescient. My oldest sister arrived the next day, and he died two weeks later. I was tempted to return as it was clear the final day was approaching, but there was little point. We had all said our goodbyes. We had all reconciled ourselves. The hospice nurses were visiting him daily, and he was protected, as he wished, from aggressive intervention. The eldest embraced her responsibility to care for him, and the rest of us embraced our obligation not to interfere. We were a team. We were his family.

Harrington, a retired gastroenterologist and former hospital trustee in the Johns Hopkins Medical System, is writing a book about end-of-life decision-making.

Physician Orders for Life-Sustaining Treatment, or POLSTs, are available in about 25 states.

Unlike a traditional advance directive, which expresses wishes in general and requires interpretation by emergency and hospital physicians, POLST orders are developed and signed by the patient’s primary-care physician to expand “Do Not Resuscitate” orders to include options for comfort care only or to set limitations on breathing support, feeding tubes, antibiotics, transfusions, etc. When they arrive in the emergency room with the patient, these orders are immediately implemented and require no interpretation by emergency physicians. They are appropriate for seriously ill or elderly, frail patients.

More information about POLST can be found at polst.org.

Complete Article HERE!

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Q: How can I learn more about advance directives/advance care planning?

Cecelia Clayton, MPH, is the executive director at Karen Ann Quinlan Hospice.

Q: How can I learn more about advance directives/advance care planning?

cecelia-clayton
Cecelia Clayton

A: During National Hospice Month it’s important to know your options. All adults can benefit from thinking about what their health care choices would be if they are unable to speak for themselves. These decisions can be written down in an advance directive so that others know what they are. Advance directives come in two main forms:

Proxy Directive (Durable Power of Attorney for Healthcare)
A proxy directive is a document you use to appoint a person to make healthcare decisions for you in the event you become unable to make them yourself. This document goes into effect whether your inability to make healthcare decisions is temporary because of an accident or permanent because of a disease. The person that you appoint is known as your “healthcare representative” and they are responsible for making the same decisions you would have made under the circumstances. If they are unable to determine what you would want in a specific situation they are to base their decision on what they think is in your best interest.

Instruction Directive (Living Will)
An instruction directive is a document you use to tell your physician and family about the kinds of situations you would want or not want to have life-sustaining treatment in the event you are unable to make your own healthcare decisions.

You can also include a description of your beliefs, values, and general care and treatment preferences.

This will guide your physician and family when they have to make healthcare decisions for you in situations not specifically covered by your advance directive.

Advance Directive: Your Right to Make Health Care Decisions
You have the right to:

  • Ask questions about your care.
  • Completely understand your medical condition.
  • Accept or refuse any treatments.
  • Make future decisions by completing an advance directive.
  • If you have a life-limiting illness — you have the right to choose the hospice of your choice.

Karen Ann Quinlan Hospice has ready-made packets with current Living Will information available at no charge. The packets can be picked up at the desk at the hospice office at 99 Sparta Ave, in Newton, or call the hospice at 973-383-0115, or at 800-882-1117 to have one mailed to you.

AdvanceDirective

Free seminar

More information will be available at the “Ask An Elder Law Attorney” seminar that will be held from 10:30 to 11:30 a.m., Dec. 8 at the Pike County Public Library in Milford, Pa.

The event is free to the public and light refreshments will be served.

Attendees will be able to ask questions about elder care, estate planning, living trust, last will and testament, advance directives and more. For more information, visit www.KarenAnnQuinlanHospice.org/Seminar.

Here is a checklist to consider to plan ahead or if you need help now.

  • Get the information you need to make informed choices about end-of-life care.
  • Get to know end-of-life care services that are available, such as hospice and palliative care providers.
  • For information, visit the National Hospice and Palliative Care Organization’s website: www.nhpco.org
  • Discuss your thoughts, concerns and choices with your loved ones.
  • Talk to your doctor about different treatments.
  • Establish advance directives (a living will and medical power of attorney) for your state.
  • Talk to your healthcare agent, family and doctor about your choices.
  • Discuss your choices often, especially when your medical condition changes.
  • Keep your completed advance directives in an accessible place.
  • Give photocopies of the signed originals to your healthcare agent, alternate agents, doctor, family, friends, clergy and anyone else who might be involved in your healthcare.
  • Assess your financial situation, create a financial inventory and determine what end-of-life goals you want to accomplish that involve money.
  • Learn about the cost of end-of-life care, how medical bills and expenses will be paid for if you are not able to.
  • Make financial decisions such as how you want to give your money and possessions to others upon your death.
  • Prepare for the time when you cannot handle money matters; appoint a durable power of attorney.
  • Plan your funeral/memorial service.

The living will is a direct result of the Karen Ann Quinlan landmark case won by Joseph and Julia Quinlan in 1976 on behalf of their daughter, Karen Ann.

Complete Article HERE!

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How would you like to die? It’s time to talk about it…

‘You get to die only once, and you have one chance to get it right’

By Alan Kirk

Discussing your end-of-life plans is about making your death less traumatic for your family and loved ones, and having your own wishes respected, as much as possible.
Discussing your end-of-life plans is about making your death less traumatic for your family and loved ones, and having your own wishes respected, as much as possible.

[H]ow would you like to die? Is this a question you ever ask yourself? More importantly, is it a question you ever answer? And, most importantly, is it an answer you share with your family?

For many it seems, the answer is no. Yet, when asked, it is something many of us would like to do. When the Irish Hospice Foundation (IHF) carried out research, they found 60 per cent of people thought there wasn’t enough discussion about death, yet 66 per cent have never discussed what they want around their end-of-life care with family.

“It’s a clear case of what people want versus what people do,” says Sharon Foley, chief executive of the IHF. “You get to die only once, and you have one chance to get it right. It’s so important to think about what you want for yourself at the end of life, now, while you still have capacity, to ensure the proper care and support for you, and less trauma for your family and loved ones.”

>When the doctor asked to talk to my dad and I, and we followed him into a side room, I knew it wasn’t good. All previous conversations had been in the ward corridor. This room had comfy chairs and a box of tissues. The room itself was the opening conversation about my mum’s death. He sat us down and explained that my mum’s stroke had been catastrophic causing significant brain damage, paralysis, double incontinence and that her chances of survival were not good. I had seen enough of my mum to know also that, if she did survive, her chances of living were not very good either.<

The doctor asked us what we wanted to do, if my mum needed to be resuscitated. Neither of us hesitated or even looked at each other to confer. We both said immediately, “Do not resuscitate.” We were lucky. We knew what my mum would have wanted. She had told us often enough. But I often wonder what would have happened if we had looked at each other first, and one of us defiantly had said yes.

But this is what often happens, as the decision over a parent or spouse’s death is left up to family members who are already in a deep place of distress. We know medical science is improving all the time and people are living longer, an obviously positive development. But it is also a challenge to respond to the care needs of an ageing population. While the medical profession has rightly focused on quantity of life, has society focused enough on the issue of quality of life? And, in particular, end of life?

According to Foley, no. “I liken it to the discussions in the 1980s around breast cancer. Women didn’t discuss it with friends. There were whispers about the ‘Big C’ and, as a result, women didn’t get screened, or get any support. Now screening and support are a part of life. We need the same sea change around our wishes regarding end of life.”

Critical conversation

For obvious reasons, thinking about our, or our parent’s death, is an upsetting notion, but, as Justin Moran of Age Action explains, it is critical to have that conversation while you still can. “We all think and prepare for what we leave behind in terms of our house and our legacy, but what about your own death? Thinking clearly about how you might want to be treated – or not – and ensuring decisions aren’t left to those you are leaving behind is about empowering people to make decisions for themselves while they can.”

The Irish Hospice Foundation encourages people to give guidance to family through a a campaign called Think Ahead and Have Your Say campaign, and this year legislation has come out introducing the opportunity for us all to leave a “living will”.

The Advanced Healthcare Decisions Bill gives people the chance to communicate their final healthcare requests when they might no longer be in a position to do so, and to provide healthcare professionals with important information about the patient’s treatment choices. You can also appoint a designated healthcare representative – a close friend or family member – to make healthcare decisions on your behalf if you no longer have the capacity to make those decisions.

A good death

“There is a lot of debate around what a ‘good death’ is,” says Foley. “This is about making death – something already heartbreaking and distressing for all – as respectful to the wishes of the patient as possible.”

Justin Moran acknowledges these are hard conversations to have with our parents or children. “It’s about ensuring that you retain as much control as you can over that part of your life.You don’t want to leave that responsibility to the people you love, who are already going through a tough time.”<

But is it enough? Back in that hospital room, we agreed to a DNR if my mum stopped breathing. But it was another five and a half years before she took her last breath. In the final months, in consultation with doctors, we took a further step to withdraw active life-prolonging treatment after she suffered a series of hospital-admitted infections which caused distress to everyone, especially her. We knew my mum’s wishes. But even at the end all we could do was withdraw treatment and wait and watch for the several weeks that nature took its course. She was never in pain. But she was distressed. She watched us, watching her die.

In many ways my mum had a “good death”. She died in my arms at home, with my dad and brother holding her hands. We had spent the previous two weeks constantly by her side, talking and touching, loving and laughing, holding her tight and letting her go. But, as her daughter, it was a terrible death.

Once we knew she was dying, once doctors confirmed she had passed the point of any recovery, there was nothing we could do but let her linger and languish as her body slowly shut down. She could easily have died when we had nipped to the loo, or gone to put the kettle on. The stress of that fear haunts me still. The conversation about dying has only just begun. But, for now, if we love the life we live, if we love the family we leave behind, if we want to be in control of our living, then as a society and individually, we need to talk more about dying.

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Push To Take End-Of-Life Forms Digital Reveals Complicated Path Ahead

By Karen Shakerdge

molst
The top portion of a paper MOLST form. It says, “The patient keeps the original MOLST form during travel to different care settings. The Physician keeps a copy,” on all four pages.

Dennis Rodgers flips over a bright pink piece of paper and rattles off his choices:  “Attempt resuscitation or do not attempt resuscitation… to do limited intervention or to take no medical intervention… and another section, whether to intubate or not to intubate.”

Rodgers, 82, says he and his physician filled out the form together when he moved to a community outside of Rochester, N.Y.

For years physicians in New York state have asked seriously sick patients to fill out this paper document, capturing their wishes in case of emergency.

Most Americans don’t plan ahead for end of life. But for those who do, like Rodgers, there’s a risk that the right people won’t even see the document when it really matters. After all, a piece of paper is easily lost or left behind in an emergency.

Advocates and lawmakers in New York are now pushing to shift the paper system to a mandatory electronic database for better access. But the requirement would call for a technology fix that’s not coming easily.

Most states have some version of these documents, typically called a Physician Order for Life Sustaining Treatment, or POLST. In New York state, the form is called MOLST. It stands for Medical Order for Life Sustaining Treatment.

Unlike advance directives, the MOLST form is a detailed legal document, prepared with a physician. MOLST forms are not meant for the general population. They’re meant for patients who physicians suspect may die within a year.

Without a POLST-like form, physicians or paramedics are trained to keep someone alive including aggressive life-sustaining treatment, if need be.

Nearly everyone benefits if patients make their medical wishes clear. Patients make sure they’re not subjected to measures they don’t want. Family members don’t have to wonder. And insurance companies can save money.

End of life care is one of the biggest medical expenses in our health system. About a quarter of traditional Medicare costs are for expenses patients incur in their last year of life, according to a report from the Kaiser Family Foundation.

“The majority of states right now have a POLST process. The question is how effective is that process if I can’t get access to that as a health care provider?” asks Rick Bassett, chair of the national POLST technology committee.

A handful of states have established electronic databases for these forms — eMOLST is New York state’s version. Lawmakers are considering a bill that would require doctors to submit an electronic version when they fill out a hardcopy within 14 days.

In theory, this would ensure access to the form no matter which clinic or hospital a patient may end up in during an emergency, explains Patricia Bomba, vice president and medical director of geriatrics at Excellus BlueCross BlueShield and director of the MOLST program.

“It just is the better way to do it,” she says.

Excellus currently funds the MOLST and eMOLST systems, 100 percent.

But even the electronic solution has its own problems to work out.

“Even if you fill out one of these forms — having it actually pop out in front of the right person at the right time has been a really big challenge,” says Kirsten Ostherr, a Rice University professor focusing on health and medical digital media.

There are major access issues, Ostherr says, in general, when it comes to electronic medical records. For one, different hospital electronic record systems don’t link to each other or to the E-MOLST database, which is separate. And outside providers, like paramedics don’t usually have access to these systems.

The current eMOLST system is just not accessible for busy doctors, explains Daniel Mendelson, director of palliative care and associate chief of medicine at Highland Hospital in Rochester.

“Expecting a medical provider to look in their own record is reasonable. Asking them to look at an outside record and multiple outside records is probably not going to happen,” he says.

Mendelson was on the original team that developed the paper MOLST form in New York. He’s a self-described “power user” and embraces technology. But he doesn’t use eMOLST because it doesn’t directly connect to the system his own hospital uses for patient information.

For his own father, he trusts the paper form more than the eMOLST system.

“It’s not that people are not hardworking and well meaning, but how many tasks can you load somebody with in an emergency?” Mendelson asks.

At least two hospitals in New York state have successfully developed a direct connection between an electronic health records system and eMOLST.

The in-house information technology team at NYU took a few months to work on the connection, start to finish, according to Christine Wilkins, advance care planning program manager at NYU’s Langone Medical Center.  Providers can use one password to sign on and view medical records and a patient’s eMOLST.

Wilkins says they hope the easier to use technology will help doctors start using eMOLST more. And that will ultimately benefit patients.

“It’s about having a more robust conversation, but then, it’s having a much better way to document what their wishes are. And for that documentation to be seen across the board,” Wilkins says.

Another hospital, Orange Regional Medical Center, in Middletown, N.Y. also established single sign on for its providers earlier this month.

Currently, the eMOLST system has roughly 10,000 patient files, according to Katie Orem, eMOLST administrator at Excellus BlueCross BlueShield. That’s about 10 percent of New York state residents who die from chronic disease every year, she says. If the bill passes, New York would have a statewide database.

Complete Article HERE!