Category: Philosophy of Living

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Should I Help My Patients Die?

By JESSICA NUTIK ZITTER

[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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A good death

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

[T]HE 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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Zen Hospice co-founder works to create mindful, compassionate care

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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Learning to live before I die

By Roberta Ness

I am going to die.

I don’t mean right this moment and I don’t mean that I invite it. I mean that it is inevitable. Echoing in my mind ever louder is the old adage, “the only thing guaranteed in life is death.”

Most of my life – until the very end of it, for many of us – we simply deny death. We forget or don’t hear or don’t heed the echo. But I’m doing the opposite. Like the famous commentator Norman Cousins I’ve decided to embrace dying. Cousins said, “Death is not the greatest loss in life. The greatest loss is what dies inside us while we live.”

First, let me explain what seems like a morbid focus on my mortality. You can skip the next few paragraphs if you’re easily grossed out, and for a long time I didn’t tell anyone because it’s pretty disgusting. A couple of years ago, I developed life-threatening diarrhea. Imagine that dreaded clean-out prep you have to undergo for a colonoscopy. Except that it doesn’t just go on for a day; it goes on for days without end. Just keeping myself hydrated was a constant challenge. I laid on the couch pretty much unable to get up. Fortunately, my gastroenterologist made a diagnosis of an autoimmune disease like lupus – except that my immune cells seem to particularly love munching on my colon.

Also, fortunately, modern medicine has developed a special steroid that for me was a cure that helped me to be, thankfully, (mostly) symptom-free. Then I went to South Africa and all hell broke loose. My colitis symptom – eliminating huge quantities of brown water as often as every 15 minutes – recurred full blast. Again, a raft of tests revealed the diagnosis and a treatment. It was none other than traveler’s diarrhea – three types of E. coli were all partying in my bowels and a blast of antibiotics took them out.

Out of the woods again – whew – except I wasn’t. About a week later I got yet another series of bouts. This time my stool tests were clean. So what was going on? Just as I faced another colonoscopy I remembered the miracle steroid. I had tried it after South Africa and it did nothing. But that was when I’d been loaded with bacteria. Maybe the bugs had triggered a recurrence of the underlying disease? So I started myself back on the steroid and I seem to be OK again. But coming to terms with the fact that I will live the rest of my life with this autoimmune condition has forced me to acknowledge my own mortality.

As my friends age, each is confronting death. Those with chronic diseases are dealing with this reality more actively. But even in those who remain entirely healthy and robust, I see signs – mostly signs of denial.

Don’t get me wrong. Denial is a terrifically adaptive defense mechanism. But is it the best way to avoid dying while we still live? What does it look like for me to not just deny but actually welcome my lifetime limit? It looks like the Tim McGraw song:

“I went skydiving. I went Rocky Mountain climbing. I went 2.7 seconds on a bull named Fumanchu. And I loved deeper. And I spoke sweeter. And I gave forgiveness I’d been denying. And he said, ‘Someday I hope you get the chance to live like you were dying.’ ”

I’m not so sure about the bull riding and the skydiving, but other than that I’m living by McGraw’s recipe. I’ve taken up Ecstatic dancing. I’ve become a regular at ad lib storytelling events – although so far just as an audience member. I’ve been traveling more and to more exotic places. I’ve gone to my first rock ‘n’ roll concert. I’m even going (only because my 20-something children invited and are going with me) to Burning Man – a kaleidoscopic art and music happening in the Nevada desert. And, yes, I know that temperatures there range from 110 degrees during the day to 30 degrees at night, and I know I’ll need to truck in all my own provisions including tent, water and a face mask for the sandstorms.

Most importantly, I’ve been giving/asking for forgiveness. And I’ve become incredibly committed to loving more deeply. So yes, I’m dying. But inside I’m more alive than I’ve ever been.

Complete Article HERE!

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Facing the Abyss: Planning for Death

By Kevin Dieter

“The hurrier you go, the behinder you get.”

 
Puzzlingly, the older and more “seasoned” I become, the more this bit of Amish wisdom is true. Especially when it comes to reading. I don’t have time to read. So, I was surprised when I found myself reading a recent publication from the National Quality Forum. However, as serendipity would have it, I am so glad I did. This publication, “Strategies for Change: A Collaborative Journey to Transform Advanced Illness Care“ had me hooked with the introduction. They had the beautiful audacity to suggest that physicians can and do have the ability to engage in conversation about the taboo (their term) subjects of death and mortality. As I read further, I was rewarded with a section devoted to “peaceful death and dying.”

There has been debate about whether we truly live in a death denying culture. I believe that we do. Strongly so. Ernest Becker, in his Pulitzer prize winning book The Denial of Death, makes a compelling case that western societies are THE most death-denying in all of history. I see the results of this everyday. Our mortality, the inevitable finality of this life, is routinely disregarded as an essential contribution to the plan of care. The result is a series of squandered opportunities for healing and even transformation at the end of life. Very sick patients are referred to hospice without a prior discussion of goals of care and resuscitation status. Very sick patients travel from hospital to hospice house, often dying on route. But even more common is a never-ending procession of the dying patients and their loved ones who come to the end of life totally unprepared.

The poet W.H. Auden described death as “the rumble of distant thunder at a picnic.” It’s a brilliant metaphor. In my mind, in that scenario, we have 3 choices. The first choice is to totally ignore the thunder and hope that the storm blows north, but when the storm does hit, we will be totally unprepared and will be in some danger. The second choice is to recognize that the storm is coming, and to feel dread that it will totally ruin the remainder of the picnic, and yet do nothing to prepare for it. The third option is to recognize the threat that the thunder represents, to reorganize priorities and enjoy the good weather while you can, and then be packed and ready to seek shelter when the storm hits. I believe these metaphorical choices are similar to our society’s attitude toward death. Most of us choose the first 2 options in regards to our own mortality.

The medicalization of death and dying, increasingly prevalent following World War II, has placed physicians in a difficult situation. Advancements in medical technology, the rise of consumerism, and the strengthening voice of patient autonomy have encouraged society to give us the responsibility of managing death, but for the most part we are poorly trained and generally not inclined to do so. We have, however, made significant progress in helping patients and their families negotiate the myriad of decisions and break points they encounter as their health fails and they traverse the healthcare system. This progress, through many variations of advance directives, follows the thread of “quality of life.” I picture the patient as Indiana Jones, running through the jungle, dodging spears and traps, tumbling and rolling, and finally seeing the clearing in the trees. With the screen focused squarely on their face, I see the expression go from anticipation and relief to dread as they look down into the 10,000 foot abyss. Advanced Directives and Goals of Care discussions may get them through the jungle, but when it comes time to die, they are horribly unprepared. Very little time, they realize, was spent considering the quality of their death. It is time to die, and they haven’t imagined themselves on this death bed.

Dying patients and their loved ones today enter a space totally unfamiliar. One hundred years ago, most Americans grew up in household where death occurred and dying was more accepted as a part of daily life. Today, many of us live on the surface of life, existing from Tweet to Tweet. Richard Groves calls this “the demon of busyness.” Our attention span has been measured in seconds. Dying, and being with the dying, often requires sitting with uncertainty for long periods of time. We are very uncomfortable being there. It often does not sound, look or smell nice. Dying is the ultimate time of transition for those involved in the loving and caring for the dying. Without experience, and with difficulty accepting uncertainty, many patients and families come to the dying time unaware of what to expect, and worse, how to prepare.

We need to work much harder at preparing our patients for end-of-life. This is not our responsibility alone, however. There seems to be a grassroots movement developing that encourages open discussion about death and dying. Social media is exploding with new and increasingly innovative ways to initiate and encourage this dialogue. The demon of busyness is being met head on by card games, like “GoWish”, and interactive art such as the “Before I Die “ walls. These social instruments allow our society to begin the uneasy discussion about what has been taboo. In medieval times, the practice of “ memento mori,” a constant gentle reminder of their own mortality, served the purpose of improving the quality of their life,  But it also improved the quality of their death. They heard the thunder, they prepared for it, and they enjoyed the picnic.

We can, and should, be part of the discussion. We should initiate it and foster it. Consider hosting a Death Cafe or buy and distribute GoWish card games. Volunteer at a local hospice doing bedside vigils, and write about what you learn. We can become more comfortable in talking about quality of death. We can improve the quality of our patients lives by helping them consider the quality of their dying. It will require that we  prepare ourselves by facing our own mortality.  We can and should be living and breathing versions of memento mori. We should not run and hide. Our death denying culture needs leaders to help our very sick and dying face the abyss. If not us, then who…?

Complete Article HERE!

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Why it’s so hard to die in peace

By Robert J. Samuelson

[F]or those of us who had hoped that American attitudes toward death were shifting in ways that would promote a wider reconstruction of the health-care system, there’s discouraging news from Health Affairs, the preeminent journal of health policy. It devotes its latest issue to “end-of-life” care and finds that — at least so far — the power to make health care more compassionate and cost-effective is limited.

That was the vision. Americans would become more realistic about death. Through “living wills,” they’d reject heroic — often futile — treatment to keep them alive. Health spending would be lower (by one estimate, a quarter of Medicare spending occurs in the last year of life). People would die with dignity. They’d be spared needless suffering.

Superficially, the vision seems to be triumphing, according to the 17 studies in Health Affairs. By one study, a third of American adults — and nearly half those 65 and older — have some sort of living will. From 1999 to 2015, the share of Americans who died in hospitals dropped from more than half to 37 percent. Over the same period, the number dying at home or in a hospice rose from less than a quarter to 38 percent. Moreover, at 8.5 percent of health costs, spending in the last year of life is lower in the United States than in some other countries.

But on inspection, the gains seem less impressive. The share of people with living wills has remained stuck for six years. According to another study in Health Affairs, the increase in hospice care is not substituting for expensive hospital care but adding to it. Said the study by Melissa Aldridge of Mount Sinai hospital in New York and Elizabeth Bradley of Vassar College:

“What has emerged [is] a relatively new pattern of hospice use. . . . Hospice enrollment [has become] an ‘add-on’ in health care after the extensive use of other health care services and within days of death.”

Patients receive expensive care until nearly the end, when they’re switched to hospice care. This obviously limits the potential for reducing costs and for relieving patients’ suffering. In addition, spending for the last year of life, though significant, is still a small share of total spending, refuting the argument that the high cost of dying explains why U.S. health care is so costly.

“We found that U.S. health spending [during the last year of life] was less than one-tenth of total U.S. health care spending [8.5 percent] and thus cannot be the primary cause of why U.S. health care is so much more expensive than care in other countries,” concluded another study in Health Affairs headed by Eric French of University College London.

(The fact that the effect on Medicare is much larger reflects simple arithmetic: Because Medicare represents only about a fifth of total U.S. health spending, the spending in the last year is being compared with a smaller base.)

None of this means that end-of-life care can be ignored. Indeed, the problems will almost certainly worsen, because much care-giving is by families and friends. Already, 29 percent of the adult population — two-thirds of them women — consider themselves caregivers.

As the population ages, the burdens will grow. In 2010, the ratio of potential caregivers (people 45 to 64) to those aged 80 and older was 7-to-1; by 2030, it’s projected to be 4-to-1. Alzheimer’s cases are increasing. Spending pressures on Medicare and Medicaid will intensify.

Just whether the persistence of high-cost care reflects good medicine, a deep human craving to cling to life, or both is unclear. But the rhetoric about “end-of-life” care has changed more than the reality. To the question — Can we die in peace and with dignity? — the answer is “not yet.”

Complete Article HERE!

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Want Control Over Your Death? Consider A ‘Do Not Hospitalize’ Order

Eighty percent of terminally ill patients say they don’t want end-of-life care to be intensive.

By Ann Brenoff

Eighty percent of terminally ill patients say they want to avoid hospitalization and intensive care at the end of their lives. But such hospital stays nevertheless occur fairly frequently ― even though they don’t seem to make much difference. Studies have shown that people who received less intense care in the last six months of life did not have a higher mortality rate than people who received more intense care.

So it’s worth asking why elderly and terminally ill patients are put through stressful hospitalizations, procedures and medical tests that only wind up blemishing their final days.

One reason: Hospitals can do it, and Medicare will pay for it.

A report from the Dartmouth Institute for Health Policy and Clinical Practice notes that “the intensity of care in the last six months of life is an indicator of the propensity to use life-saving technology.” The institute found that if you live in an area that has a big teaching hospital with the latest medical equipment, chances are you’ll spend more of your final days admitted to it. In 2014, patients in Boise, Idaho, spent 3.9 days of the last six months of their lives hospitalized, compared to 13.7 days for New York City patients.

Some patient advocates and chronically ill patients want to reduce end-of-life hospitalizations through the use of advance care planning directives. The most common of these is the “do not resuscitate” order, which instructs the hospital and doctors that if your heart stops beating or you stop breathing, you do not wish to have CPR. Absent such a directive, hospital staff will try to help any patient whose heart or breathing has stopped.

Far less common ― but potentially much further-reaching ― are “do not hospitalize” directives, which stipulate that you don’t want your caregivers to take you to the hospital for care. A recent study found that these orders are indeed effective at preventing unwanted hospitalizations.

A small research study of nursing home residents in New York state found that overall, 6 percent of residents had DNH orders. Of those people, just 3 percent spent time in a hospital during their last 90 days of life, compared to 6.8 percent of people in the study who did not have a DNH order. In other words, the people who did not have an order were more than twice as likely to be hospitalized.

On a practical level, having a directive that says you don’t want to be admitted to a hospital ― except under certain conditions, specified by you ― basically means a nursing home or family caregiver will do what they can to treat you and let nature take its course. Hospice care is available through Medicare as well.

Family caregivers sometimes mistakenly think “do not hospitalize” means “do not treat.” But that’s not the case. A DNH order can stipulate that under specific circumstances, like if you are bleeding or in extreme pain, you do, in fact, want to be treated at a hospital.

Advance medical directives have been publicly encouraged for a long time, yet only 38 percent of Americans have them, according to a recent study. Perhaps it’s because death and dying are topics that make us uncomfortable. Or perhaps it’s just that directives don’t always work.

Doctors are not legally bound to follow your advance directive. The law gives them and others legal immunity if they follow your wishes ― but they are not obligated to do so. ƒIn fact, doctors can refuse to comply with your wishes if they have an objection of conscience or consider your wishes medically inappropriate. If that’s the case, they have an obligation to transfer you to another health care provider who will comply, according to the American Bar Association. But this is hardly a guarantee that your directive will ultimately be carried out.

A bigger problem may come from the ambulance crew. Advance medical directives are pretty ineffective once someone dials 911. The job of a first responder is to attempt to resuscitate the patient and transport them to a hospital. If you don’t want that to happen, why call?

Overall, DNH orders aren’t being widely used. In 2007, a Harvard Medical School researcher examined a national database of more than 91,000 nursing home residents with late-stage dementia, and found that just 7.1 percent had DNH directives.

But not everyone thinks that’s a bad thing. Dr. Rebecca Sudore, a geriatrician and medical professor at the University of California, San Francisco, said that while “DNH may be good for decreased costs, it is not always the best thing for the patient.”

“Although DNH may be appropriate for some patients, I am concerned about what widespread DNH orders may mean on a population level,” Sudore told HuffPost in an email. “It may be appropriate for some, and not appropriate for many other people. I think that other outcomes such as controlled symptoms, relief of suffering, quality of life, satisfaction, caregiver stress etc. are as important, if not more important, than hospitalization.”

She noted that the “the goal should be to honor patients’ wishes and to provide care that alleviates suffering

“For some people, staying out of the hospital may accomplish their goals if they have access to good quality symptom control and care,” she said. “For other people who are suffering from symptoms that cannot be controlled at home or in a nursing home, then being in the hospital may be the best way to honor their wishes and prevent suffering.” And those wishes should be optional, she said, and subject to change.

Complete Article HERE!