08/19/17

To Treat or Not to Treat: What Would Your Loved Ones Want at the End of Life?

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Ensuring that the care you get reflects your wishes and values

When someone you love is hospitalized with a grave illness or injury, you may face decisions about their care.

Cardiopulmonary resuscitation (CPR), mechanical ventilation, tube feedings, surgery, chemotherapy or other interventions may add weeks, months or years to their life.

If your loved one has an advance directive (living will), it will spell out which interventions they want and don’t want. If they don’t have one and can’t speak for themselves, how should you proceed?

To help families learn to make good choices in this situation, Silvia Perez Protto, MD, Director of our Center for End of Life Care, answers key questions below. 

Q: What’s the first thing families should consider?

A: First, determine whether the patient is capable of making a decision about treatment. If so, your best option is to explore their wishes and values:

  • What are they expecting and hoping from treatment?
  • What are the trade-offs of treating versus not treating?
  • What risks are acceptable and not acceptable to them?
  • Which do they value more: quality of life or quantity of days?

Depending on their age, situation and views, answers will vary.

One paralyzed patient may be happy sitting with family and watching TV. Another may not.

One patient may want doctors to extend her life despite pain, nausea, or loss of mobility to see her son graduate from college. Another may be unwilling to experience serious side effects from a treatment that isn’t 100 percent effective.

We want to honor the patient’s wishes. When patients can’t communicate and have no advance directive, we look to families for guidance.   

Q: What’s the best way to start the conversation?

A: I encourage families to talk to loved ones about end-of-life wishes and values before they get sick or develop a serious condition. You won’t go wrong trying to explore someone’s wishes and values.

When I asked my own mother what she wanted at the end of her life, I learned she wanted to be around her five children, to be able to communicate with us and to be independent. This led me to understand that if she became terminally ill and couldn’t recognize us, she wouldn’t want to live like that.

Some people wouldn’t mind being on a feeding tube or a ventilator, unaware of their environment. Others wouldn’t want to live in a vegetative state.

These questions are tough and emotionally difficult to ask mom or dad. Even I got stuck talking to my mom. But we can always ask for help. A spiritual care advisor or palliative care doctor at your hospital can facilitate these discussions.

(And remember to tell loved ones about your wishes and values, too.)

Q: Do larger issues get in the way of these discussions?

A: I think not talking about death is cultural. It’s how we see life, it’s our spiritual background, it’s our own fear of dying.

I’ve heard patients say, “I feel like I’m dying, but my kids don’t want to talk about it.” This isolates them at the end of life. Pain and isolation or abandonment are our main fears when we’re dying.

But the more we talk, the less fear we’ll have. Everybody’s going to die. Avoiding the topic won’t decrease the chances of dying. As a society, we need to normalize death. Being born, growing up, having kids, dying – these are all part of the life cycle.

Q: What questions should you ask about end-of-life care?

A: If you’re worried how an illness may impact the end of your life, talk to your family doctor, primary care doctor or specialist. Ask, “What are the side effects, risks and benefits of the treatment you’ve recommended?” Once you have that information, see how it lines up with your wishes and values.

If you want your doctor to keep trying to treat the disease, we can provide palliative care along with the treatment, controlling your symptoms and minimizing your pain. If you choose to end treatment, it doesn’t mean we’re giving up. We’ll still provide palliative care right up until the end.

Our goal in the ICU is always to get patients better and back to a functional life at home. But that’s not always possible. We can aim either to extend life or to offer the best quality of life in the time the patient has left.

These conversations and advance directives show us how to proceed and help us allow patients to die with dignity.

Q: Are there proven benefits to end-of-life planning?

A: Yes. Studies show that when advance care planning is done, the family’s experience and the patient’s experience are better. In the United States, autonomy is very important. Advance directives help you maintain your autonomy at the end of life.

Healthcare providers are encouraged to obtain advance directives and document patient’s wishes in their chart for all caregivers to see.

Q: Any final word for families?

A: I encourage families to see death as a natural act and to understand the value of a natural death. We can do many things to extend life, but sometimes the price we pay is having no quality of life.

Complete Article HERE!

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08/18/17

A Quaker Approach to Living with Dying

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By Katherine Jaramillo 

I’ve been present with hundreds of people as they’ve died, hundreds more who were already dead by the time I was paged, and hundreds more who were in their dying process. I’ve accompanied spouses, parents, children, friends and family members as they’ve experienced the horror and sorrow of grief. For the past 20 years, I’ve been a chaplain, mostly in hospitals, a few with hospice. In doing this work, I’ve crossed death’s path more often than I can count as I’ve zigzagged my way through the hospital corridors and in the homes of folks experiencing the last days, weeks, months of life. Those of us on the interdisciplinary healthcare team struggle, as best we can, to provide our dying patients with a “good death,” however they and their families define such. There’s a saying in healthcare, “People die as they have lived.” Sometimes that is not the case, but, more often than not, that’s the way it goes.

Often, Quakerism is defined as a way of life. Some questions that I have carried for years in the ministry of chaplaincy include the following:

  • What does our Quaker faith and spirituality offer us as we face decline, diminishment, and death?
  • What can we say, as Quakers, with regard to dying and death as a personal and spiritual experience?
  • Is there a Quaker way of dying? How do we, as Quakers, do this?

My formative experience with regard to the Quaker way of dying was by accompanying a Friend through her decline and death. Her final illness, dying process, and death were Quaker community and meeting experiences. Her experience wasn’t a private or family-only affair. When she couldn’t come to meeting, small groups of Friends were dispatched to her home, hospital, or nursing facility to have meeting for worship with her. Friends from meeting stayed with her overnight in the hospital when she had to be on the breathing machine and was so uncomfortable and scared. She had a committee of trusted Friends who arranged for her practical needs when she was still able to live independently, including staying with her 24/7 when just home from the hospital and at times of extreme debility. These Friends helped with discernment regarding transition from independent living to a skilled nursing facility. In what turned out to be her final hospitalization, these Friends helped her discern her choice to decline heroic life-sustaining treatment and allow herself a natural death. Friends reflected with her about her desire for integrity and living in alignment with the testimonies, her beliefs about an afterlife. She was afforded the opportunity, though her Quaker way of living, to proceed to a Quaker way of dying. One First Day, as we knew death was approaching, our meeting of about 80 Friends decided to meet in a hospital conference room for worship. About halfway into the worship hour, a Friend came downstairs to announce our Friend’s death. It was a gathered meeting. Our Friend died the way she had lived.

Last year, desiring conversation on these questions, I facilitated an interest group I called “The Quaker Art of Dying” at the Pacific Northwest Quaker Women’s Theology Conference. The conference brings women together from the divergent Friends traditions in the Pacific Northwest, primarily from Canadian, North Pacific, and Northwest Yearly Meetings, as well as other independent meetings and churches, to articulate our faith and to learn from each other. The group was well attended and diverse. I presented three queries to the group for discussion. We broke into small groups each taking one of the queries, then reconvened into the large group to get the bigger picture.

What is a Quaker approach to declining health, dying, and death?

Friends reported their understanding that all life is sacred and Spirit informs all life. A Quaker approach would be a mindful, conscious, and prepared approach, with an excitement—or at least a willingness—to enter the mystery of death. It was agreed that a Quaker approach would involve less denial that someone is dying or that death is imminent. There is a value for listening, hearing one another’s experiences, and entering new situations with curiosity, not offering answers. Especially for Liberal Friends, but for some Evangelical Friends as well, there was less focus on an afterlife. A Quaker approach would be a well-ordered approach, with orderly records, legal documents, and final letters and lists of wishes. Friends agreed that cremation was customary and in alignment with Quaker values. The writing of a memorial minute was another Quaker tradition to document the passing of a Quaker life. As one Friend stated, “The Quaker approach is portable; you can take the heart of the Quaker way wherever it needs to go.”

How do our beliefs, testimonies, and values inform our approach to the end of life?

Friends agreed in their understandings that we have a direct connection with the Divine. Some Friends voiced a lack of fear about death. Others voiced fears about the decline of physical and cognitive abilities and the actual process of dying, such as the possibility of pain, loss of competence, being a curmudgeon, or depleting family resources. One Friend likened the burdens of dying to birthing: “Both are hard work.” Friends agreed that upholding the dying person in community benefits the community as well as dying person. Friends voiced an intention to allow support and presence of others as we approach the end of life, as well as taking all the alone time we need.

How can we prepare for death? Our own and that of our loved ones? A list emerged.

We need to:

  • Pray.
  • Think about what we want.
  • Talk about what we want, even though it is difficult, especially with our children.
  • Talk about what others want.
  • Talk with our families about our wishes.
  • Pray some more.
  • Deal with unfinished business—either finishing it or leaving it unfinished, but dealing with it intentionally.
  • Educate ourselves about health decline and the dying process by reading books like Atul Gawande’s Being Mortal.
  • Talk with our spouses or significant others, about things we’ll need to know if they can’t tell us themselves for whatever reason.
  • Prepare for the process:
    • Who do we want involved? Who do we not want involved? Do we want a care committee or not?
    • How do we want our remains disposed? Do we prefer cremation or burial? If we want to be cremated, do we want our remains to be scattered, interred, or buried?
    • What do we want for a memorial or funeral?
    • Do we want an obituary; a eulogy? What would we want said in our memorial minute?
  • We need to help meetings and churches be prepared for the decline, debility and deaths of their members and attenders.
  • Keep praying.

This conversation continues. In a recent meeting of our Quaker women’s discussion group, I facilitated a robust discussion about a Quaker approach to end-of-life issues and posed similar queries to the group. Evangelical Friends spoke of the “continuum of life” that transcends death, the need for “being right with God,” and the peace that “being with Jesus” will bring. Liberal Friends spoke of “entering the mystery” and “going into the Light.” There seemed to be agreement and assurance that “all will be well” at the end of physical life. Some women focused on the need to enter this time of life with their “affairs in order.” Other women spoke of their experiences accompanying a dying person in their meeting or church or in their own families. All seemed to enjoy the discussion of “things we don’t usually get to talk about” and voiced an intention to encourage further discussion in our churches and meetings. Later this month, I will attend my own meeting’s retreat where the topic will be “Spirituality As We Age.” No doubt, we will be continuing the discussion of how we Quakers intend to die as we have lived.

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08/17/17

Medical Aid in Dying: What My Dog Taught Me

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by

He was sick, but it wasn’t like he was going to die anytime soon. A year ago, my dog Sierra sustained a neurological insult that left him delirious, unable to walk straight and almost entirely blind and deaf. Still, he enjoyed our loving touch, snuggling against my thigh as I watched a movie or falling asleep in my arms while being held. I struggled with these thoughts as the vet pushed the pink, fluid-filled syringe into his vein. He collapsed into my arms and let out a groan, as he had many times before. But this time, he did not get up.

I said goodbye and left him to join my parents standing in the waiting room. My father looked up at me, “Is it done?” I nodded, and suddenly, we all broke into tears. We embraced each other and talked about what a good dog he was. We told each other it was the right thing to do, that it was time. But was it? Why now?

I couldn’t help but think we were being selfish. Objectively, nothing much had changed since his suspected stroke, albeit he was undoubtedly more of a burden. We were constantly cleaning up after him, redirecting him when he got caught in a corner and paying for vet visits and medications. But the bottom line was that he still found enjoyment in life. Was the choice to put him down for our wellbeing or for his?

Health professionals and loved ones struggle with these same questions when caring for those nearing the end of life. Sierra’s decline came at a poignant time, one in which many are fighting for the right to choose death in the face of terminal illness or suffering. Currently, five states allow those with a terminal illness and a prognosis of less than six months to end their life with the help of a physician, also known as “medical aid in dying.” Canada legalized physician-assisted death in 2016, joining a small number of countries that have laws enabling this practice.

The principle behind these laws is relatively simple. People want to die with dignity, and in the process of fighting for the right to do so, they’ve ironically improved end-of-life care. As a free nation that claims to be a leader in health care, why have we not adopted this practice? While poking fun at “the land of the free,” Jim Jeffries, an Australian comedian known for his outsider political commentary, pointed out that “assisted suicide for the sick … is the biggest freedom of them all.”

Opposition to physician-assisted death comes from both the public and from within the medical profession itself. Deeply rooted societal ideals, values and norms fuel the debate. From day one, physicians take an oath to “do no harm.” Common sense tells us that healthcare professionals are supposed to help heal the sick, not to “help” them die. Furthermore, for some patients, taking one’s life goes against their religious values and/or our fundamental values as human beings. Also, many families find that loved ones nearing the end of life are often incapable of making well informed decisions due to fear, depression or the effects of disease on their mind. And so we choose life, even when death seems so near.

Despite the moral controversy, attempts have been made at giving patients the right to take control of their own death in the United States. Numerous court cases have brought the legality of this practice into light culminating in the 2006 Supreme Court case Gonzales v. Oregon. Under this ruling, the federal government failed to prohibit physicians in Oregon from prescribing drugs to help patients die, opening the door for states to legalize medical aid in dying. Organizations such as the Death with Dignity National Center have taken it upon themselves to both educate the public on end-of-life options and to advocate for physician-assisted death. Even so, there has been little done to legalize this practice in federal law.

Lawmakers took a step in the right direction during discussions about health care reform and the implementation of the Affordable Care Act (ACA). The misleadingly-termed “death panels” were a way to incentivize physicians to have discussions about end-of-life care with their patients. Unfortunately, this section of the ACA was thrown out due to political controversy. Finally, in 2015, the Centers for Medicare and Medicaid services approved regulations that allow qualified healthcare professionals to be reimbursed for providing advance care planning to patients. Still, moral and legal barriers persist, preventing patients from making the decision that is right for them.

Looking back, I am grateful that Sierra left us when he did. Choosing to put him down was not easy, but afterwards, I came to an important realization. By choosing death at that moment, we determined when, where and how he died. We chose a period when our family was home together so that we could spend quality time with each other in his last moments. This pronounced the end of our living relationship, giving us a sense of completion. We made sure that he died with us, in a peaceful environment, around those he loved instead of alone on the kitchen floor. He was able to leave the world peacefully and quietly without the suffering of a drawn out painful death that would taint our memory of his long and happy life. Sometimes, I wonder if the groan he let out at the end was a sigh of relief, a goodbye or even a thank you.

Complete Article HERE!

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08/14/17

A New Game Helps You Navigate Difficult End-of-Life Conversations

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By Michelle Woo

Call it the new game of Truth. Players go around the table answering questions in their little blue booklets, but these questions aren’t geared to get them talking about that one time they went skinny dipping in Maui. Instead, the questions aim to launch difficult conversations, ones that may be painful, ones they may have been avoiding for far too long.

“Who haven’t you talked to in more than six months that you would want to talk to before you died?”

“What music do you want to be listening to on your last day alive?”

“Which is more frightening to imagine: suffering the worst physical pain of your life or not getting a chance to say goodbye to your family?”

This game is called Hello, and its goal is to get people talking about end-of-life issues in a way that’s easy and non-threatening. The most revolutionary aspect of it—and it’s such a simple thing—is that everyone can and should play. (Newsflash, friends: we’re all gonna die.) So often when it come advance care planning conversations, we single out the person who is sick or elderly, and it can feel like an interrogation. That is, if we even get to the conversations at all. According to Nick Jehlen, the lead designer of the game, people are often too nervous or distraught to delve into these real, complex discussions, or they feel it’s never the right time. The talks, he says, “just don’t happen.”

Families, friends, organizations and healthcare teams have gotten together to play Hello, which is created by Common Practice, a company that promotes better conversations about living and dying well. Some of the questions were written by backers of the Kickstarter campaign for their original game, My Gift of Grace. The topics range from the logistical (“If you needed help going to the bathroom today, who is the first person you would ask to help you? Who would you never be able to ask?”) to the abstract (“What do you think happens to you after you leave this life?”). Each player gives out game chips—“thank you chips”— to other players as they feel moved to, which creates, as Jehlen describes, “an economy of gratitude” within the game.

Jehlen says,“It’s challenging, and sometimes people do cry, but what we’ve really done is create a set of structures that help people be supportive of each other. Almost every time I play with a new group, people share things they’ve never talked about before, and just as importantly, they feel good about it.” He adds, “It sounds crazy, but the game is fun.” Of people who play Hello, 75% go on to complete an advance care planning step within a few months.

Talking about our own mortality doesn’t just save others from guilt, trauma and expense down the road—these conversations can actually improve our quality of life. They help us to really narrow in on what matters to us here and now. Perhaps a game can help get the ball rolling.

Complete Article HERE!

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08/7/17

Should I Help My Patients Die?

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I WAS leafing through a patient’s chart last year when a colleague tapped me on the shoulder. “I have a patient who is asking about the End of Life Option Act,” he said in a low voice. “Can we even do that here?”

I practice both critical and palliative care medicine at a public hospital in Oakland. In June 2016, our state became the fourth in the nation to allow medical aid in dying for patients suffering from terminal illness. Oregon was the pioneer 20 years ago. Washington and Vermont followed suit more recently. (Colorado voters passed a similar law in November.) Now, five months after the law took effect here in California, I was facing my first request for assistance to shorten the life of a patient.

That week, I was the attending physician on the palliative care service. Since palliative care medicine focuses on the treatment of all forms of suffering in serious illness, my colleague assumed that I would know what to do with this request. I didn’t.

I could see my own discomfort mirrored in his face. “Can you help us with it?” he asked me. “Of course,” I said. Then I felt my stomach lurch.

California’s law permits physicians to prescribe a lethal cocktail to patients who request it and meet certain criteria: They must be adults expected to die within six months who are able to self-administer the drug and retain the mental capacity to make a decision like this.
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But that is where the law leaves off. The details of patient selection and protocol, even the composition of the lethal compound, are left to the individual doctor or hospital policy. Our hospital, like many others at that time, was still in the early stages of creating a policy and procedure. To me and many of my colleagues in California, it felt as if the law had passed so quickly that we weren’t fully prepared to deal with it.

That aside, the idea of hastening death is uncomfortable for many doctors. In its original version, the Hippocratic oath states, “I will not administer poison to anyone when asked to do so, nor suggest such a course.” The American Medical Association, the nation’s largest association of doctors, has been formally opposed to the practice for 23 years. Its ethical and judicial council has recently begun to study the issue further.

At a dinner shortly after the law went into effect, I polled 10 palliative care colleagues on their impressions of it. There was a chorus of groans. Like me, they were being asked about it with increasing frequency, yet hadn’t found an answer that felt right. It wasn’t necessarily that we disapproved, but we didn’t want to automatically become the go-to people on this very complex issue, either.

This first patient of mine was not a simple case. When I walked into his room, he glared at me. “Are you here to help me with this aid-in-dying thing?” he asked. He was in his early 60s, thin and tired, but in no obvious distress. From my read of his chart, he met all criteria to qualify. Terminal illness, decision-making capacity, ability to self-administer the medications. And he had made the requisite first request for the drugs two weeks earlier, as procedure dictates.

When I asked why he wanted to end his life early, he shrugged. “I’m just sick of living.” I asked about any symptoms that might lie behind his request: unrelenting pain, nausea, shortness of breath. He denied them all. In palliative care, we are taught that suffering can take many forms besides the physical. I probed further and the floodgates opened.

He felt abandoned by his sister. She cared only about his Social Security payments, he said, and had gone AWOL now that the checks were being mailed to her house. Their love-hate relationship spanned decades, and they were now on the outs. His despair had given way to rage.

“Let’s just end this,” he said. “I’m fed up with my lousy life.” He really didn’t care, he added, that his sister opposed his decision.

His request appeared to stem from a deep family wound, not his terminal illness. I felt he wanted to punish his sister, and he had found a way to do it.

At our second meeting, with more trust established, he issued a sob, almost a keening. He felt terrified and powerless, he said. He didn’t want to live this way anymore.

I understood. I could imagine my own distress in his condition — being shuttled like a bag of bones between the nursing home and the hospital. It was his legal right to request this intervention from me. But given how uncomfortable I was feeling, was it my right to say no?

In the end, he gave me an out. He agreed to a trial of antidepressants. “I’ll give you four weeks,” he said. He would follow up with his primary care doctor. I couldn’t help feeling relieved.

The patient died in a nursing home, of natural causes, three months later. And I haven’t had another request since. But the case left me worried. What if he had insisted on going through with it?

I’ll admit it: I want this option available to me and my family. I have seen much suffering around death. In my experience, most of the pain can be managed by expert care teams focusing on symptom management and family support. But not all. My mother is profoundly claustrophobic. I can imagine her terror if she were to develop Lou Gehrig’s disease, which progressively immobilizes patients while their cognitive faculties remain largely intact. For my mother, this would be a fate worse than death.

But still. I didn’t feel comfortable with the idea of helping to shorten the life of a patient because of depression and resentment. In truth, I’m not sure I am comfortable with helping to intentionally hasten anyone’s death for any reason. Does that make me a hypocrite?

I realized it was past time to sort out my thinking and turned to the de facto specialist in our area on this issue for counsel. Dr. Lonny Shavelson, an emergency medicine and primary care physician in Northern California, has been grappling with the subject for many years.

Given his interest in the topic, Dr. Shavelson felt a personal obligation to ensure that this new practice would be carried out responsibly after the law was passed. He founded Bay Area End of Life Options, a consulting group that educates physicians, advocates on patients’ behalf and prescribes the lethal concoction for some patients who meet the criteria for participation.

He has devised a process for his patients that not only adheres to the letter of the law, but goes far beyond it. His patient intake procedures are time-consuming and include a thorough history and physical, extensive home visits, a review of medical records and discussions with the patients’ doctors. He assesses the medical illness, the patient’s mental and emotional state and family dynamics.

He does not offer the medications to most of the patients who request them, sometimes because he deems them more than six months away from death or because he is worried that they have been coerced or because he believes that severe depression is interfering with their judgment. Since starting his practice, he has been approached by 398 patients. He has accepted 79 of those into his program and overseen ingestion and death for 48.

Dr. Shavelson’s careful observations have made him something of a bedside pharmacologist. In his experience, both the medications used and their dosages should be tailored to individual patients. While all patients enter a coma within minutes of ingesting the lethal cocktail, some deaths take longer, which can be distressing for the family and everyone else involved. One of his patients, a serious athlete, experienced a protracted death that Dr. Shavelson attributes to the patient’s high cardiac function. After that experience, Dr. Shavelson began to obtain an athletic history on every patient, and to add stronger medications if indicated.

In another patient, a mesh stent had been deployed to keep his intestines from collapsing. This stent prevented absorption in key areas, slowing the effect of the drugs and prolonging his death. Dr. Shavelson now routinely asks about such stents, something that a doctor less experienced in this process might miss.

Dr. Shavelson strives to mitigate all symptoms and suffering before agreeing to assist any patient in dying. He recounted many cases where patients no longer requested the medications once their quality of life improved. He counts these cases among his greatest successes. This demonstrates that his commitment is to the patient, not the principle.

When I asked Dr. Shavelson how he might have proceeded with my patient, he said he would have tried everything to relieve his distress without using the lethal medication. But if in the end the patient still wanted to proceed, he would have obliged, presuming his depression was not so severe as to impair his judgment. “I don’t have to agree with a patient’s reasoning or conclusions,” he said. “Those are hers to make, just as much as turning down chemotherapy or opting not to be intubated would be.”

I recently called colleagues at other hospitals to learn how they were handling this law. Like me, most of them hadn’t yet had much experience with it, but their involvement has mostly been positive. They described the few cases they had handled as “straightforward” — patients had carefully thought through the decision and had full family support. Most patients were enrolled in hospice care and supported throughout the ingestion process by trained personnel, almost always in their homes. My colleagues reported that they were free to opt out of the program if they were uncomfortable prescribing the medications. (Catholic health systems do not participate.)

Dr. Meredith Heller, director of inpatient palliative services at Kaiser Permanente San Francisco, said that while she understood my ambivalence, she herself felt significantly better about it than she had expected to. “Surprisingly, the vast majority of cases here have gone smoothly,” she told me.

A little over a year after the law went into effect, I am heartened by the positive responses I am hearing from my colleagues around the state. I am relieved that most cases seem straightforward. I am grateful that there are dedicated physicians like Dr. Shavelson willing to do this work. And I am reassured by the knowledge that patients in California now have the legal right to exercise this power when they feel there is no other path.

But I am also concerned. As our population continues to grow older and sicker and more people learn that this law exists, we will need a highly trained work force to steward patients through this process.

My patient deserved an evaluation by a physician like Dr. Shavelson, not someone like me, with no training in this area and ambivalence to boot. We need formal protocols, official procedures, outcome measurements, even a certificate of expertise issued by an oversight board. None of these are in place in any participating state, according to Dr. Shavelson. Yet all medical procedures require training. Why should one this weighty be an exception?

What about payment? Providers can bill for an office visit and the cost of the medication. But because there are no specific codes established for this procedure, reimbursement doesn’t come close to covering any effort to do this well. On top of that, many insurers won’t cover it, including federal programs like Medicare and the Veterans Health Administration.

And will this new “right” be available to everyone? Most communities won’t have a Dr. Shavelson, who offers steep discounts to low-income patients. I worry that public hospital patients like mine will not be able to afford this degree of care. These are inequities we must address.

THERE is another question I feel compelled to raise. Is medical aid in dying a reductive response to a highly complex problem? The over-mechanization of dying in America has created a public health crisis. People feel out of control around death. A life-ending concoction at the bedside can lend a sense of autonomy at a tremendously vulnerable time.

Yet medical aid in dying will help only a tiny fraction of the population. In 2016, just under four-tenths of 1 percent of everyone who died in Oregon used this option. Other approaches such as hospice and palliative care, proven to help a broad population of patients with life-limiting illness, are still underused, even stigmatized. The American Society of Clinical Oncology recommends that patients with advanced cancer receive concurrent palliative care beginning early in the course of disease. In my experience, far too few of these patients actually get it.

Unlike medical aid in dying, which will be used by a small proportion of the population, palliative interventions can improve the lives of many. My patient hadn’t been seen by a palliative care physician before he made his request. Although recommended, it isn’t required by law. And yet this input gave him another option.

Medical aid in dying is now the law in my home state, and I am glad for that. But our work is just beginning. We must continue to shape our policies and protocols to account for the nuanced social, legal and ethical questions that will continue to arise. We must identify the clinicians who are best qualified and most willing to do this work and then train them appropriately, not ad hoc. And we must remember that this is just one tool in the toolbox of caring for the dying — a tool of last resort.

Complete Article HERE!

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08/5/17

A good death

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It would be foolish to think that we can control when our time is up. But neither should we face that moment unprepared. Not only for our sake, but for the people we leave behind.
 

By Vivien Shiao

THE only certainty in life is death. But this is not something we like to think about – not when we are at our prime, our careers powering ahead, and the future bright. In fact, as you flip through the papers, about to tuck into a nice brunch with loved ones, you may even question why we want to mention it at all, potentially casting a pall on a perfectly good weekend. The reality is, there are just as many ways to die as there are ways to live. It can come like a thief in the night, sudden and without warning. For others, death comes as an impending train – relentless and closing in. Or sometimes, long after the body and mind have withered, death still does not come. As the ultimate human experience we all cannot run away from, it matters how we approach death. How we live the rest of our days depends on it.

What a good death means

A good death is hard to define. In many instances, the process of dying is described as a battle to be won, a fight between life and death. Rage, rage against the dying of the light, wrote poet Dylan Thomas.

But doctors intimate with death tell The Business Times that this struggle to extend life without thought to its quality is not necessarily what people want.

Dr Ng Wai Chong, chief of clinical affairs, Tsao Foundation, is a physician who is well acquainted with death. To him, a good death is the ultimate challenge. “It is one with a good mind, one that is peaceful, one that has closure. All the big questions in life have been answered… To prepare for a good death, you need to live a life that is responsible and with a clear conscience.”

Those who are prepared are typically contented, accepting and also grateful, says Dr Ng. For Dr Neo Han Yee, a palliative care consultant at Tan Tock Seng Hospital, a good death means a life of little regret or guilt, and being at peace knowing that loved ones will be taken care of. “It is difficult to achieve zero suffering, but on a spiritual aspect, these people feel that their lives have been worthwhile and they are ready to move on.”

A good death also has a social dimension, he explains: People with the “foresight” to invest their time and effort in relationships, in turn, receive support in their last days from family and loved ones. They are the ones with the wisdom to prepare early and help family members cope with their impending passing, he says.

Planning for the end

A good death doesn’t come by accident. It takes planning and preparation in many aspects – financial, legal, psychological, social, medical, and even spiritual – to make it happen. This is not just to ease one’s passage, but also to ease the burden on loved ones.

If the end-of-life process is a long drawn out one, the stakes are even higher. For example, if you become mentally incapacitated due to your illness and your children have no idea what your last wishes are, they could end up spending tens of thousands trying to treat you, in the hopes of extending life.

Not only could this increase your distress in your last days (though with no ill intention), the lack of clarity is likely to result in conflict among family members, and financial issues. Such a scenario may seem like the stuff of TV dramas, but it is a lot more common than you think, according to experts that BT spoke to. So, rather than wait for a crisis to strike, it may be prudent to plan ahead when things are hunky dory and you still have sound presence of mind. This could prevent unnecessary expenditure, heartache and headache for others further down the road.

Alfred Chia, CEO of financial advisory firm SingCapital, says that procrastination is one of the biggest mistakes that people tend to make regarding their finances. He is also the co-author of Last Wishes: Financial Planning, Will Planning and Funeral Planning in Singapore. “Planning for death should not be viewed as taboo or negative. In fact, it is a celebration of our life in this world,” Mr Chia says. He advises people to plan for retirement early to avoid “huge financial stress” later. Work out the amount needed each month for the ideal lifestyle post-retirement and the number of years you expect to provide for, he says. The right insurance policy can also help achieve your goals in a more cost-effective way, he adds.

Other mistakes he has observed others make is to fall prey to financial scams, and to invest in instruments that don’t suit their risk profile. He says: “There is a saying that when I pass on, I have not spent all my money. While that is a regret, it will be even more regretful if I have spent all my money, and yet am still alive with no capacity to earn an income.”

On the flipside of the coin, those who are extremely wealthy have even more compelling reasons to plan. To manage their wealth, they often turn to family offices – private wealth management advisory firms.

Mr Chia says that planning ahead for the wealthy can help keep family unity and prevent squabbles over inheritance. Family offices can also spread the distribution of wealth over an extended period so that the children won’t be “spoilt” with the sudden wealth, he adds.

Working with the law

When life ends, a host of issues crop up for loved ones, that can only be properly resolved within the confines of the law.

Most people know the significance of wills, but there are other considerations such as trusts and Lasting Power of Attorney, or the LPA.

A will is for the distribution of assets after one’s death, while an LPA is for the appointment of a person or persons (known as the donee) to make decisions for you on “health and wealth” before your death.

Doris Chia, litigation partner of David Lim & Partners, saysthat most people with elderly parents would want to do an LPA, so that they are able to access their parents’ bank accounts or assets to pay for their parents’ medical bills when their parents are unable to do so.

One thing to bear in mind is that the LPA only kicks in in the event of loss of mental capacity. So although you may do an LPA now, it may only be valid decades later, says Ms Chia. Or, it may never come into effect at all if the person who appointed the LPA remains mentally healthy.

Ms Chia also warns that the LPA comes under the Mental Capacity Act, which means it can only be made by a person of sound mind. Once there is an onset of a mental issue such as Alzheimer’s or senile dementia, it will be too late to make one.

The consequences can be serious. She cites an example where the mother of one client became mentally incapacitated and then fell ill, and the client was unable to sell a private property that she owned jointly with her mother.

Without an LPA, she had to apply to the court for deputyship to sell the property, to fund her mother’s medical needs. This process cost “tens of thousands of dollars”, according to Ms Chia.

“A person applying to be a deputy has to file several affidavits in court. This also costs money. You can save all this heartache now by doing an LPA. What’s the harm?”

According to the Office of the Public Guardian, the fee for LPA certificate issuers ranges from S$25 for a general practitioner to S$500 for a psychiatrist – still much more affordable than applying for deputyship.

Another group of people that Ms Chia urged to apply for LPAs are singles, and people who identify as LGBT (lesbian, gay, bisexual, transgender).

“For LGBT people, it is essential to do an LPA as it allows the partner – and not family members, if that is your choice – to make decisions on your personal welfare and property and affairs. Otherwise, legally, your partner has no say over such matters in such circumstances.”

Where there’s a will

Aside from the LPA, the will is another matter to be considered seriously. For non-Muslims who die without making a will, distribution of assets will be according to the Intestate Succession Act. For example, the surviving spouse will get 50 per cent of assets, with the rest divided among their children. For singles, the assets will go to their living parents. Otherwise, it will go to their siblings.

Muslims follow the Muslim intestacy law, the faraid. Only one-third of their assets can be willed away, with the rest distributed according to the faraid.

For those who don’t want to follow the standard distribution rules, making a will is vital. Some people, Ms Chia has observed, don’t trust their spouses too much and prefer to give everything to their children.

The existence of a will gives much quicker access to assets. For people who die with a will in place, a Grant of Probate allows the process to move much faster compared to the Letter of Administration for those who die without a will, says Ms Chia.

Even so, the existence of a will is no guarantee that it will be carried out. It may be hidden, or lost, or challenged. It’s important that the executors of the will – those who will administer and distribute your estate upon death – know where the will is, together with proper instructions on bank accounts, assets and insurance policies.

Details make all the difference. “I always say to my clients, do a will that can last many years,” says Ms Chia. “Don’t say Property A goes to one son, and Property B goes to another son. If you sell Property B and you forget to amend your will, one son will end up with nothing.”

Instead, she recommends that the executor be instructed to sell all assets and for the proceeds to be distributed according to percentages.

State of mind and health also matter. It’s better to make a will when you are healthy and of sound mind so that there will be no dispute later, Ms Chia advises. She observes that most people do not think about end-of-life decisions until they are forced upon them. But wills are sometimes contested if the person had made it when they were very old or very sick.

Giving the assets in a trust, as opposed to in a will, prevents challenges by family members, says Ms Chia. Often used for succession planning, a trust protects family assets for the good of beneficiaries who are either too young, financially immature or vulnerable until they either come of age or reach a certain maturity.

The assets put into a trust are a gift made in a person’s lifetime, and not upon his death. Once the assets vest in the trust, they no longer belong to him. The assets will not form part of his assets at the point of his death and hence, a trust cannot be contested, explains Ms Chia.

Having a trust could also mitigate the heavy taxes applicable to estate duty in certain overseas jurisdictions, or safeguard assets from the possibility of lawsuits by creditors.

One particular group that can benefit are family members with special needs, she adds. Setting up a trust with that particular person as the beneficiary is a way to plan for a day when one can no longer care for him or her in person, says Ms Chia.

A conversation about care

Perhaps, due to cultural mores, or perhaps the need to “protect” their parents, some children refuse to even talk about death with their elderly parents, even as it is looming.

Sometimes, the severity of their condition – or even the amount of time they have left – is deliberately kept from them by well-meaning family members, thinking that mentioning it will result in emotional instability.

TTSH’s Dr Neo observes: “Quite often, when a person is so sick, family members are pushed into a corner. They don’t know how to broach the topic.”

But doctors and healthcare professionals are actively trying to change this mindset with the introduction of the Advanced Care Plan (ACP). It is a voluntary discussion on future care preferences between an individual, his or her family and healthcare providers.

While not legally binding, it describes the type of care the person would prefer, if he or she is to become very sick and unable to make healthcare decisions in the future. Compared to the Advanced Medical Directive (AMD) which has a very narrow scope of criteria, the beauty of the ACP is in the conversation, says Dr Ng from the Tsao Foundation.

“The goal is to respect a person’s rights to self-determination. It encourages people to think about existential issues and helps the people conducting it to get into the value system of the person. Scenarios might change, but the general drift is there, so it will bring some clarity.”

Otherwise, caregivers who don’t know what patients want will end up going on the “path of least resistance”, which often means over-investigation of treatment, says Dr Ng.

An AMD allows you to register in advance your wishes not to have any extraordinary life-sustaining treatment to prolong life in the event that you become terminally ill and unconscious and where death is imminent. However, the definition of a “terminal illness” is extremely specific.

Among the wealthier and more educated patients or caregivers, Dr Ng has also observed a sub-group of people who approach medical conditions with a consumer attitude. Instead, he advocates having a doctor as a lohealth partner that you can trust, with a relationship built over a long time.

“I see people over-treat, over-investigate, but a primary care doctor is a better way of managing health. The person can help you clarify your purpose, your goals and the best strategy to proceed. Along the way, he can even do your ACP with you and be a facilitator when it comes to complex family dynamics.”

Beginning with the end

It is not just the medical aspect of health that people should take into account in their last days. There’s also the need to think about the social, emotional and psychological state of the person.

TTSH’s Dr Neo explains that the intensity of pain is often heavily coloured by one’s emotions. To cope with the end of life, people must build up psychological preparedness and fortitude, he says.

To him, thinking about death is constructive for thinking of life.

He observes: “Life is impermanent. You treasure people around you a lot more, you don’t waste time on things not worth it. You invest your time and effort in things worthwhile. You know how to value relationships much more, so when the time comes, you will be wiser as you have thought about it for a longer period of time.”

To build psychological maturity, he advises people to find a higher meaning in life, or a certain “calling”. Singaporeans tend to forget this, he notes, as we trudge along in our work and family life. Happiness is always projected in the future, instead of finding meaning in one’s current existence.

At the crux of it, people are too busy trying to beat each other or accrue financial gain to think about their own vulnerability, says Dr Neo.

“We live in a very illusory world. Only when a crisis hits then will the person be shaken and realise that life is fragile. If we don’t make mental, emotional and financial preparations before, you will find it hard to cope with the situation. We often underestimate how much we can prepare for death.”

No one can predict how much time we have left on this Earth. But if we put in as much thought about how we want to die as much as we think about how we want to live, surely our days here – limited though they may be – will be all the more precious and meaningful.


What you need to know

Will

  • Make sure your executors can find it. Ms Chia from David Lim & Partners cites an incident when a client made a will and was so secretive about it that his family couldn’t find it after his death. Be aware also that:
  • The will is sometimes contested if it was made at a time when the person was very old or ill.
  • CPF nominations and insurance policies with a named beneficiary are not part of the will.
  • Property – private or HDB – held in joint tenancy will automatically go to the survivor and hence cannot be part of the will for distribution.

Lasting Power of Attorney

  • Can only be used when the person who makes it (the donor) loses mental capacity and is only valid when the donor signs it when he is of sound mind.
  • One fear that people have about LPAs is that their children or donees can “help themselves” to the donor’s money when he or she is mentally incapacitated. Ms Chia debunks this: The money can only be used for the person’s welfare and medical expenses, and they will need to submit accounts to the Office of the Public Guardian, which serves to safeguard the interests of individuals who lack mental capacity and are vulnerable. In addition, more than one donee can be appointed to guard against dishonesty.

Trust

  • Anyone can set up a trust, says Ms Chia, but the costs are higher compared to arranging a will, or even setting up a private interest foundation, an entity which has the characteristics of both a company and a trust. “If the trust requires professional trust managers to make investment decisions or payments over several generations, this will cost money to administer. One needs to weigh the asset value against the cost of administering the trust,” she says.

Advance Medical Directive

  • Legally binding, but very narrow definition of “terminal illness”.
  • The AMD registry is only accessible during office hours. A doctor facing an emergency situation in the night will be unable to retrieve and verify an AMD. In fact, the AMD Act Section 15 has also been frequently interpreted as an offence for a doctor to query his patient about his AMD, according to Dr Neo of TTSH.

Advance Care Plan

  • Puts everyone on the same page, as it describes the type of care you would prefer, if you become unable to make healthcare decisions in the future. U For people with an ACP, the palliative care is much smoother for everyone involved as they don’t feel burdened with tough decisions, says Dr Ng of Tsao Foundation.
  • Not legally binding, and can be changed and reviewed, preferably with your primary care doctor or the main doctor tending to your advanced illness.

Complete Article HERE!

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07/31/17

Zen Hospice co-founder works to create mindful, compassionate care

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If someone is going to be a compassionate presence to the dying, “they have to look at their own relationships to these issues — to sickness, to aging, to dying and to suffering,” says Frank Ostaseski, with his cat Bodhi on his Sausalito houseboat.

By Colleen Bidwill

After losing both of his parents at a young age, Frank Ostaseski channeled his pain into a life of service.

Frank Ostaseski’s “The Five Invitations” shows what dying can teach about living.

Ostaseski, 65, of Sausalito, has been an advocate for contemplative end-of-life care, and was honored by the Dalai Lama for his years of service to the dying. In 1987, he co-founded the Zen Hospice Project, the first Buddhist hospice in America, and in 2004 created the Metta Institute, which teaches physicians, nurses and family members how to practice “mindful and compassionate care.”

His recent book, “The Five Invitations,” shows what dying can teach us about living.

Q What made you be a champion for mindful and compassionate care?

A Death and I became friends very early on, or at least we got acquainted very early on. My parents died when I was quite young. My mother when I was 16 and my dad a few years later, and then, I worked for a long time with kids who were severely disabled. That kind of introduced me to my life of service, and later, I worked in refugee camps in Mexico and Central America. Then, I came back and the AIDS epidemic was hitting and so, one thing was stumbling into another, in a way. And one of the things that I saw was what mattered most: not necessarily the treatment plan that the person was involved in, although that is important, but what mattered was the quality of the presence of people around him or her.

Q What are you teaching end-of-life caregivers?

A The first thing if someone is going to be a compassionate presence, is that they have to look at their own relationships to these issues — to sickness, to aging, to dying and to suffering. … We teach our physicians and nurses and others to learn to listen very precisely and not in the context of what is happening, but also to the emotional and to the somatic cues that person is giving. And then you give information in a way that is accessible to the other person.

Q You’ve sat by more than 1,000 bedsides of those who were dying; was that difficult?

A Oh, absolutely. It’s a lot. I try to be real with people, in other words, if I feel grief, I will share it. I’ll say, “I’m going to miss you.” “I’m really learning a lot from you.” “Wow, this is so sad to hear you say this.” So, it can be difficult but difficulty doesn’t stop me. During the AIDS epidemic I was working with 20 to 40 people a week who were dying, so I had to do things that really balanced me. I went to a hospital in San Francisco where my friends were nurses and they were taking care of babies that had been born to addicted mothers, and I would hold these babies in a rocking chair. There was something about that, that gave me the wherewithal, the strength, to continue and to do the work that I was called to do. I also did life-affirming things; I swam in the bay because it’s cold and it’s refreshing. I still do that.

Q What is a typical day for you?

A When I was running the Zen Hospice, I was on call 24 hours a day, seven days a week, that was my life. And I was raising four children at the same time. I retired from that, in about 2005, to focus my attention more on teaching and mentoring others. That happened partially because, after 20 years, it was time to let other people take that role, and also my children were growing up and my caregiver energy started to shift and my teaching energy came forward. I travel, quite a lot. My day often includes getting to and from airports, and then finding myself in front of a group of people, and my primary job is to keep them human. The expectations on [doctors] are really just unbelievable — they’re being driven mercilessly by a system that’s making unreasonable demands on them, so it’s natural that they start to shut down because that’s a strategy. So if we can help them stay engaged without burning out, that’s a huge gift to the world.

Complete Article HERE!

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