Why You Need a Health Care Proxy and How to Choose One


Taking this important step can make all the difference in a health crisis

By Debbie Reslock

How would you finish this sentence? “The end-of-life care I would want is …”

Would you want all possible measures taken? To be in a hospital or at home? Surrounded by family and friends? Once you’ve decided, now imagine arriving at an emergency room unable to speak or tell anyone what you want. If you haven’t chosen someone to express your wishes — a health care proxy (also known as a health care agent or a power of attorney for health care) — they may never be known.

According to The Conversation Project, co-founded by Pulitzer Prize-winning writer Ellen Goodman in collaboration with the Institute for Healthcare Improvement, half of those 65 and older ending up at the hospital are unable to speak for themselves. The organization has created a starter kit to help us talk about the care we’d want as well as a guide on how to choose a health care proxy.

Why You Need a Proxy

Dr. Javette Orgain has experienced up close what happens when a medical crisis hits and there’s no proxy. Orgain practices medicine at VITAS Healthcare in Chicago and is an associate professor at the University of Illinois-Chicago, department of family medicine.

It’s best for patients and their physicians to understand under what conditions a person wants to be resuscitated, be intubated or receive comfort care only.

“I’ve seen families argue over who should make the decisions and what those decisions should be,” Orgain says, adding that some have even ended up in the courts.

Stepping in with her sisters to fill the proxy role for their mother and aunt, Orgain says that as a doctor many decisions were deferred to her. But when it came time to choose who would make her end-of-life care decisions if she was unable, Orgain chose a lifelong friend. She knew there wouldn’t be the emotional pull her family might have that would shift them away from carrying out her wishes.

Choose the Right Person as a Health Care Proxy

It’s vital to find the person you can trust. Orgain says she’s witnessed what happens when a health care proxy doesn’t honor what was wanted.

“It’s the most harrowing of experiences when the proxy isn’t chosen well,” says Orgain. “In fact, choosing the right proxy is as important as having a proxy.”

When families haven’t had the conversation, they’re often left at the bedside of their ill loved one with many factors pushing on them, says Dr. Jessica Zitter, who practices critical and palliative care at Highland Hospital in Oakland, Calif., and authored the book Extreme Measures: Finding a Better Path to the End of Life.

“There can often be a push to keep people alive on a machine. If the family doesn’t know what would be wanted, we try to support them as substitute or surrogate decision makers, but it’s very stressful and painful for them,” Zitter says.

How to Choose the Best Health Care Proxy

When choosing someone to be your voice, here are a few questions The Conversation Project recommends considering:

  1. Will they be able to make decisions for you, even if their own wishes are different from yours?
  2. Will their emotional connection to you get in the way of making decisions on your behalf?
  3. Will they stand up for you?
  4. Will they be comfortable asking questions of busy doctors and other providers?
  5. Will they ask for clarification if the answer or situation isn’t understood?
  6. Will they be able to make decisions in changing situations?

From Doctor to Patient

Dr. Janet Sollod in San Francisco has seen what can happen in a medical situation from both the physician and patient side. Diagnosed with cancer 10 years ago and now no longer practicing, she found herself able to navigate confusing waters only because of her medical knowledge.

When it came time to name her own health care proxy, she knew what was important.

“I wanted someone who could ask questions and not just say ‘Yes, doctor,’” Sollod says, “or if I’m unconscious, to ask the doctors why they’re doing this test and not that one.” She wanted a proxy with a medical background. But even though her father is a physician, she knew it would be too hard for him. “It’s just too close to home,” she says.

So along with her mother, Sollod chose two close friends: one as an advocate and the other with strong medical knowledge who will ask the right questions. What she wants is for the three of them to make the best decisions together.

(The Conversation Project cautions, however, that it is generally not advisable to name more than one person to be a proxy, because if they disagree on a difficult decision, things could get complicated. You should, however, always name an alternate proxy in case your first choice becomes unavailable.)

Sollod cautions that the proxy doesn’t have to be a family member. “It might be a close friend who knows what you want,” she says. “And don’t feel bad about offending anyone. This is your life and it’s your decision.”

Put It on Paper

Having the conversations is the first step. But you’re not finished with the task of appointing a health care proxy until you put it in writing.

You will make the designation by filling out the health care proxy document. In an advance directive, you outline your wishes for health care should you be unable to speak for yourself.

You may be able to do this with one form, which you can complete without an attorney. You may need witnesses, however. Find your state’s advance directive by going to the National Hospice and Palliative Care Organization’s CaringInfo.

Looking Ahead

Unfortunately, even when people have the conversation, they can still end up on what Zitter calls the end-of-life conveyor belt. Featured in the documentary, Extremis, Zitter is shown talking to a woman with the same genetic disease her father and sister died from. The woman told her brother she wanted to die at home and yet she still ended up in the intensive care unit on a breathing machine.

It’s best for patients and their physicians to understand under what conditions a person wants to be resuscitated, be intubated or receive comfort care only. But we need to get the message out, too, that more treatment is not necessarily better, Zitter says.

There’s also the phenomenon of what she calls “the sister who flew in from the coast.” Leaving your loved one to make the decision when that person is so fragile and emotional usually means that if anyone questions it, they’ll most likely shift to prolonging life, even if that requires using machines that the person didn’t want. In fact, Zitter says, the default family and medical decision is usually to keep the heart beating.

Boomers Leading the Way

We’re making progress in talking more openly about our end-of-life decisions. Goodman is optimistic that boomers will continue to play a part.

“They changed the way we looked at birth and they’ll change the way we look at death and how we die,” she says.

We need to sit at the kitchen table and have these conversations, Goodman says, and then we need to bring it into the medical institutions. Notes Goodman: “It wasn’t a doctor who changed the way we viewed births, it was us. We said this isn’t just a medical experience, it’s a human experience. Dying needs to be seen that way too.”

Complete Article HERE!


Do-Not-Hospitalize Orders Reduce Resident Transfers, Says New Study


By Patrick Connole

A fresh look at how Do-Not-Hospitalize (DNH) orders affect the movement of skilled nursing care residents shows those residents with such directives experienced significantly fewer transfers to hospitals or emergency departments (EDs). Report authors said long term and post-acute care providers may see the information as evidence that considering DNH orders in end-of-life care plans could benefit residents and the nursing center in which they live.

“Residents with DNH orders had significantly fewer transfers. This suggests that residents’ end-of-life care decisions were respected and honored,” the authors said. “Efforts should be made to encourage nursing home residents to complete DNH orders to promote integration of the resident’s values and goals in guiding care provision toward the end of life.”

Results of the new study are in the May issue of The Journal of Post-Acute and Long-Term Care Medicine (JAMDA) in an article titled, “Are Hospital/ED Transfers Less Likely Among Nursing Home Residents with Do-Not-Hospitalize Orders?” JAMDA is the official journal of AMDA – The Society for Post-Acute and Long-Term Care Medicine.

The design of the study saw researchers examine Minimum Data Set 2.0 information from more than 43,000 New York state skilled nursing care residents. Of that number, 61 percent of residents had do-not-resuscitate orders, 12 percent had feeding restrictions, and 6 percent had DNH orders.

“Residents with DNH orders had significantly fewer hospital stays (3.0 percent vs 6.8 percent) and ED visits (2.8 percent vs 3.6 percent) in their last 90 days than those without DNH orders,” the report said. “Dementia residents with DNH orders had significantly fewer hospital stays (2.7 percent vs 6.3 percent) but not ED visits (2.8 percent vs 3.5 percent) than those without DNH orders.”

After adjusting for statistical variables, researchers said the results show that for residents without DNH orders, the odds of being transferred to a hospital was significantly higher than those with DNH orders.

One of the report’s authors, Taeko Nakashima, PhD, visiting assistant professor, State University of New York (SUNY) at Albany and adjunct assistant professor at Rutgers University, stresses that preparing DNH orders requires collaborative efforts and thorough discussion among the residents, health care proxy, and the attending physician about the goals of the resident and the resident’s prognosis and treatment options.

“Ethical end-of-life care in nursing homes must respect the resident’s autonomy and advance directive,” she says.

Complete Article HERE!


Plan for your death; be wise like Wally was


Linda Norlander is one of six reader columnists for The News Tribune.

We sat at the kitchen table with coffee and the forms. My father-in-law, Wally, had summoned me to help him fill out one of those “living will things.” We talked about what was important to him, now that he was in his 80s.

He was clear. “I’ve had a good life. I’ve never buried a child or a grandchild. When it’s time for me to go, I don’t want one of those young doctors trying to save me.” His main wish for health care at the end of his life was to be pain-free.

However, Wally’s gift to his family was not just the paper we filled out that day. His larger gift was the conversation he had many times with the family about his wishes.

When the time came that he was unable to speak for himself, and the doctors wanted to place a feeding tube to prolong his life, we were all on the same page. As my mother-in-law said, “Wally wouldn’t want that.”

With the support of hospice, he was able to say good-bye to his children and grandchildren and dispense a few words of wisdom. I remember that he advised our son with a chuckle, “You go to college. That’s good. But someday you need to get a job.” He died peacefully with all of us at the bedside.

When I meet people and tell them that I’ve worked in hospice and end-of-life care for many years, they often open up with their own stories. Unfortunately, too many of them do not end with, “I was able to carry out Mom’s wishes.” Instead, they are descriptions of having to make harrowing decisions for a loved one in the moment of crisis. I think about the son whose mother had a major stroke and was in a coma. He was told by the neurosurgeon that they would have to do surgery or she would die. What child wants to say, “No, let Mom die.”

They did the surgery and she died six weeks later, among the tubes and medical apparatus of an intensive care unit. To this day, he second-guesses whether he made the right decision. “Her last weeks of life were horrific.” When I’d asked him if he had ever talked with her about what she might want, he’d shrugged and said, “It never came up.”

We live in an era of incredible medical advances. We can replace kidneys, hearts, knees and hips. We have pacemakers, effective heart medications and all sorts of treatments for failing systems. What we usually don’t have are honest conversations about the treatments and what they might mean for the quality of life. To the son whose mother died in the intensive care unit, no one said, “If your mother survives she will likely be bedridden and comatose for the rest of her life.”

I am a proponent of doing four things regarding end-of-life care. First, sit down at the kitchen table with your family and have an honest conversation about what quality would mean for you if you weren’t able to speak for yourself. Second, name your health care power of attorney — the person who would speak for you — and give them your blessing that you will trust their decisions. Third, fill out an advance directive (the living will.) And fourth, do this now rather than waiting for a health care crisis.

I know, from years of working in the medical system, that in the moment when difficult decisions have to be made, very few doctors will seek out the health care directive document and say, “This is what your loved one wanted.” More likely, they will look at the family members and ask, “What do you want to do?”

In fact, when it came time to make decisions for Wally, we couldn’t find the health care directive. But the family knew what he wanted and we provided a united front regarding his wishes. Two weeks after he died, we finally found the form — in my mother-in-law’s underwear drawer. By then, though, Wally had already given us his gift.

Complete Article HERE!


We’re Bad at Death. Can We Talk?


A dialysis center in Paterson, N.J. Illnesses like renal failure often prove terminal, yet their uncertain progression can make it hard for patients and their families to start the conversation about palliative care and hospice.


Her last conversation should not have been with me.

I’d just arrived for the night shift in the I.C.U. when her breathing quickened. I didn’t know much about the patient, and the little I did know wasn’t good: She had cancer. Her lungs were filled with fluid. As her breathing deteriorated and her oxygen levels plunged, I searched the chart for her wishes in an emergency. Nothing.

I explained to her how rapidly her condition had worsened and asked if she’d discussed intubation and mechanical ventilation. She shook her head; she didn’t think it would get so bad so fast. Together we called her husband, who had just left for the evening, but there was no answer.

“If we do it, when will I…” she paused. “When will I wake up?”

I hesitated. It was as likely as not that she wouldn’t. I explained that we never leave patients intubated longer than necessary, but when people were as sick as she was it was impossible to know when — or even if — they would be extubated.

“O.K.,” she said. “Do it.”

There are, no doubt, differing opinions on what constitutes a good death. But this, inarguably, was not one.

For years the medical profession has largely fumbled the question of what we should do when there’s nothing more we can do. A new wave of research sheds light on what patients want at the end of life, and who is — or isn’t — getting it.

Despite growing recognition that more care isn’t necessarily better care, particularly at the end of life, many Americans still receive an enormous dose of medicine in their final days. On average, patients make 29 visits to the doctor’s office in their last six months.

In their last month alone, half of Medicare patients go to an emergency department, one-third are admitted to an I.C.U., and one-fifth will have surgery — even though 80 percent of patients say they hope to avoid hospitalization and intensive care at the end of life.

Medicare spending for patients in the last year of life is six times what it is for other patients, and accounts for a quarter of the total Medicare budget — a proportion that has remained essentially unchanged for the past three decades.

It’s not clear all that care improves how long or how well people live. Patients receiving aggressive medical care at the end of life don’t seem to live any longer, and some work suggests a less aggressive approach buys more time. Despite a popular misconception, doctors don’t die much differently: Physicians use hospice care and die in hospitals at rates similar to everyone else.

Two interventions have consistently been shown to help patients live their final days in accordance with their wishes: earlier conversations about their goals and greater use of palliative care services, which emphasize symptom control and greater psychological and spiritual well-being — and which recognize that longer survival is only part of what patients want.

Patients who engage in advance care planning are less likely to die in the hospital or to receive futile intensive care. Family members have fewer concerns and experience less emotional trauma if they have the opportunity to talk about their loved one’s wishes. And earlier access to palliative care has consistently been linked to fewer symptoms, less distress, better quality of life — and sometimes longer lives.

We’ve made significant progress in recent years: The availability of palliative care services has increased 150 percent over the past decade, and compared with patients in other developed countries, older Americans with cancer are now the least likely to die in a hospital (22 percent versus up to 51 percent). But not everyone has benefited from the palliative care movement: Large disparities remain by geography, race and type of illness.

Ninety percent of hospitals with more than 300 beds now have a palliative care program, but only 56 percent of smaller hospitals do. Patients treated at for-profit and public safety net hospitals (known for taking in those who have no insurance) are much less likely than those in nonprofit hospitals to have access to palliative care.

Complete Article HERE!


People who see death and trauma each day ask: WGYLM?


UC San Diego Nurses use a clever guerrilla marketing campaign to get their colleagues thinking about advanced directives.

By Paul Sisson

Only one in four Americans has written down their end-of-life wishes in case they end up in a hospital bed unable to communicate — despite high-profile cases over the years that have plainly shown the emotionally painful, expensive and sometimes lawsuit-ridden consequences of not making those wishes known in advance.

A group of UC San Diego nurses and doctors is engaged in an effort to increase that ratio, building a wide-reaching campaign that started with just five letters and a question mark.

Operating like a guerrilla marketing group, albeit with the approval of two key hospital bosses, they began posting signs at both UC San Diego hospitals and its seven largest clinics. The signs simply asked: “WGYLM?”

At first, they refused to explain to others what those letters meant.

“We considered that a great victory to hear, that we were irritating people with our message. It totally primed them to be on the lookout for the answer,” said Dr. Kyle Edmonds, a palliative care specialist.

In March, the letters expanded from a five-letter bloc into the question, “What Gives Your Life Meaning?” There were small signs spelling it out and seven chalkboard-size whiteboards with the question written in large letters at the top. A bucket full of Post-It notes and pens was attached to each whiteboard display and very quickly, people wrote and pasted up their responses.

God has figured into many of those messages. There also have been plenty of first names, heart outlines and attempts at humor — including a note that said, “cheese biscuits.”

Some have been quite dark. Politics have been mentioned as well, including President Donald Trump and his proposed border wall.

The next step for the project group, after thousands of notes had built up, was to add the kicker question: “Have you told anybody?”

It’s not enough to answer the question for yourself, said Edmonds and colleague Cassia Yi, a lead nurse at UC San Diego. They want people to tell their loved ones — in writing — what matters most to them, including how they want to be treated upon death or a medical emergency.

The campaign’s organizers hope that getting people to think about the best parts of their lives will provide an easier entry point for end-of-life planning.

The National Hospice and Palliative Care Organization recommends that everyone fill out an advance directive to make their wishes known in writing. Also often called “living wills,” these are witnessed legal documents that confer medical power of attorney to the person you designate if two doctors certify you are unable to make medical decisions.

Each state has its own form, and California’s asks people to specify whether they want a doctor to prolong their life if they have an irreversible condition “that will result in … death within a relatively short time or if they “become unconscious and, to a reasonable degree of medical certainty … not regain consciousness.”

This has been fraught territory, with many high-profile cases in the courts of distraught families wrestling over the decision to remove life support without any knowledge of the patient’s true wishes.

That includes the case of Terri Schiavo, who was left in a persistent vegetative state after a heart attack in 1990 caused severe brain damage. Her parents clashed with her husband, Michael, who asked the court to order her feeding tube removed in 1998 on grounds that she would not have wanted to live in such a state. Because she had no living will, it took years of very public legal wrangling before life support was disconnected on March 18, 2005.

Yi said she and other nurses feel this type of gut-wrenching stress every time a “Code Blue” page sends them scrambling for a patient who needs immediate resuscitation. Most of those patients don’t have wills or other written indications of their wishes in place, even though every patient is asked if they have an advance directive upon admission to the hospital.

“Advanced care planning wasn’t happening until people were coding out. There is nothing advanced about that,” Yi said.

Even before the current awareness campaign, Yi and her colleagues had worked with computer experts to add special categories to UC San Diego’s electronic medical records system that provide a single collection point for this kind of information. Previously, such details could be entered in dozens of different places, depending on the whims of whoever was taking notes at any given moment.

The project team also got the computer programmers to add a shortcut that allows caregivers to quickly access an advance-directive template.

Since the revamped system went live in February 2015, Edmonds said there has been a 469 percent increase in the number of patient charts that include some sort of information about end-of-life care.

But the project was not reaching every patient — or enough of the university’s medical staff.

Yi recalled a trip that some UC San Diego nurses took to the CSU Institute for Palliative Care at Cal State San Marcos. There, they saw “WGYLM?” signs and learned what the acronym meant. At the time, Cal State San Marcos was in the early stages of creating the “What Gives Your Life Meaning?” project.

The nurses thought: Why not adopt that program for UC San Diego as well? They liked that the operation could be rolled out in a provocative way and that it didn’t simply ask people to fill out advanced directives.

“It just makes an introduction in a more positive, intriguing light,” Yi said.

So far, nearly 1,300 employees in the UC San Diego Health system have taken the pledge to prepare their end-of-life documents and talk with their loved ones about these issues.

Sharon Hamill, faculty director of the palliative care institute at Cal State San Marcos, said the “WGYLM?” campaign has been held on that campus for three years in a row and has spread to sister campuses in Fresno and Long Beach.

She said the signature question was created by Helen McNeil, who direct’s the California State University system’s multi-campus palliative care institute, which is also housed on the San Marcos campus.

Hamill also said the message resonates strongly with people of multiple generations, including college students taking care of ailing grandparents or even parents.

“I love it when one of them stops me somewhere and tells me they saw one of the signs and were thinking about it all the way to class,” she added.

For more information about advance directives, go to nhdd.org.

Complete Article HERE!


Planning for death: Still not easy to talk about ‘taboo’ issue


Almost 10,000 have completed end-of-life arrangements through Advance Care Planning

Madam Amiron Jee

By Foo Jie Ying

A former nurse, she has seen her fair share of patients dragging out their final days on life support.

She is also a cancer patient. When she felt her body “going downhill” in late 2014, the Singapore General Hospital (SGH) volunteer, who had heard of Advance Care Planning (ACP) decided to find out more about about it.

She later completed her ACP with the SGH social service department.

The mother of three told The New Paper: “When I fell quite ill then, I was thinking, good thing I had this thing done. I informed my children (about my ACP).”

ACP is a series of conversations about one’s wish for care and treatment in the event of difficult medical situations, when one becomes too ill and is unable to make decisions for oneself.

It can be conducted informally between individuals and their loved ones at home using a workbook by the Agency for Integrated Care (AIC), or formally with trained facilitators present.

Close to 10,000 people have completed formal ACPs to date, since AIC rolled it out in 2011.

The Ministry of Health will reach out to 25,000 Singaporeans over the next four years, said Minister of State Chee Hong Tatlast month.

ACP will also be expanded to different care settings, like specialist outpatient clinics and in primary care, he said.

There is reluctance to talk about death because most people think a medical crisis will not happen to them, said Mr Mark Lin, who started the Good Death project to encourage early end-of-life planning.

The deputy director of Special Projects (Eldercare) at charity Montfort Care told TNP: “The idea of talking about planning for situations if anything happens to yourself can be quite a taboo.”

Madam Jee’s husband is one such example.

The couple had approached SGH’s social service department together, but unlike her, he refused to do an ACP because it is “pantang” (Malay for taboo).

But for Madam Jee, who battled breast cancer in 1998 and lung cancer in 2015, and was diagnosed with Stage 4 brain cancer last year, conversations about death are a matter of pragmatism.

“For me, I’m doing this partly for the sake of my children. I’m a cancer patient. For cancer patients in the terminal stage, it’s very hard to recover because the cancer cells are eating the body up.

“I don’t want my children to feel guilty for suggesting to let me go in peace instead of putting me on artificial nutrition to survive. It may sometimes stay with them, with them thinking ‘I shouldn’t have done that’,” she told TNP.

With her funeral arrangements made, the Muslim also does not have to worry about her three US-based children being unable to rush back in time for her burial, which must be done as soon as possible..

While it is still not easy to talk about end-of-life issues, AIC deputy chief executive Wong Kirk Chuan told TNP he hopes to overcome this by working with partners like the Singapore Hospice Council to raise awareness on these issues.

Instead of waiting for a medical crisis, Dr Wong encouraged early ACP conversations, which offer peace of mind.

Mr Lin, whose youngest clients include a 38-year-old couple, agreed. He said: “The whole point of the ACP is not what you put on the document, although it is a formal record of your wishes. It’s about the process of talking about such things.

“ACP is like a health booklet that follows you as you age. It’s something you have to keep updating.”

Complete Article HERE!


Sharing One’s End of Life Choices – via a Mobile Device



Patients can now use their smartphones to share their wishes for end of life care — whether or not they want to be intubated or have CPR, for example — with ambulance crews, loved ones, emergency-room doctors and hospitals.

No more fumbling for a piece of paper, signed by the doctor, to show health-care providers when a terminally ill loved one is rushed to the hospital. Patients in New Jersey can have their wishes become part of their electronic medical record and shared on mobile devices.

The online version of the “Practitioner Orders for Life-Sustaining Treatment” was launched Friday, almost five years after New Jersey authorized the use of a paper form for frail and severely ill patients. The online version will be part of a registry maintained by the New Jersey Hospital Association, with strict safeguards for patient privacy.

“We’re moving beyond having a green paper hanging on the refrigerator,” said Health Commissioner Cathleen D. Bennett, speaking of the paper version of the POLST forms. When patients articulate their preferences, it helps them to live on their own terms at the end of life, she said.

They can also express their goals for care, ranging from a full attack on their disease to palliative or comfort care. The form is signed by both the patient and the doctor or advanced-practice nurse, and is considered a medical order. Emergency personnel can follow it whenever the patient can’t speak for himself.

Joseph Carr, NJ Hospital Association Chief Information Officer, demonstrates how the emPOLST can be accessed electronically and how it can help inform care.

“Through this tool, more health-care providers will have immediate access to critical information they need to treat the patient according to the patient’s health-care preference,” Bennett said. “Patients with smart phones also will be able to share their electronic POLST form with a new physician, specialist or emergency-room doctor.”

In New Jersey, about 11,000 patients a year created POLST forms at each of the hospitals that participated in a study of it, said Joseph A. Carr, chief information officer for the New Jersey Hospital Association, who demonstrated the electronic version.

At a ceremony at the Villa Marie Claire Hospice in Saddle River, Bennett and Betsy Ryan, president of the association, signed an agreement for the association to become the online repository for the POLST forms. The villa, a former convent, is an inpatient hospice for 20 patients that is part of Holy Name Medical Center.

Talking about the end-of-life is one of the most important conversations a family can have, said Michael Maron, president of the medical center. The hospice’s decade of work has taught him that patients feel comforted and empowered when they are able to communicate their choices clearly and effectively, and they are understood by caregivers and loved ones.

The POLST form is available from the Department of Health or the New Jersey Hospital Association. For more information, also see National POLST Paradigm.

Complete Article HERE!