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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08/16/17

Many Avoid End-Of-Life Care Planning, Study Finds

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People with chronic illnesses were only slightly more likely than healthy individuals to put their wishes down on paper in a living will.

By Michelle Andrews 

Before being deployed overseas for the Iraq war in 2003, Army reservist Don Morrison filled out military forms that gave instructions about where to send his body and possessions if he were killed.

“I thought, ‘Wow, this is mortality right in your face,'” Morrison, now 70, recalls.

After that, his attention was keenly focused on how things might end badly. Morrison asked his lawyer to draw up an advance directive to describe what medical care he wanted if he were unable to make his own decisions.

One document, typically called a living will, spells out Morrison’s preferences for life-sustaining medical treatment, such as ventilators and feeding tubes. The other, called a health care proxy or health care power of attorney, names a friend to make treatment decisions for him if he were to become incapacitated.

Not everyone is so motivated to tackle these issues. Even though advance directives have been promoted by health professionals for nearly 50 years, only about a third of U.S. adults have them, according to a recent study.

For the analysis, published in the July issue of Health Affairs, researchers reviewed 150 studies published between 2011 and 2016 that looked at the proportion of adults who completed advance directives. Of nearly 800,000 people, 37 percent completed some kind of advance directive. Of those, 29 percent completed living wills, 33 percent filed health care proxies and 32 percent remained “undefined,” meaning the type of advance directive wasn’t specified or was combined.

People older than age 65 were significantly more likely to complete any type of advance directive than younger ones — 46 percent of older people, versus 32 percent of those who were younger. But the difference between people who were healthy and those who were sick when they filled out the directive was much smaller — 33 percent compared with 38 percent.

To encourage more physicians to help people to plan for their care, the Medicare program began reimbursing them in January 2016 for counseling beneficiaries about advance-care planning.

This study doesn’t incorporate data from those changes. But it can serve as a benchmark to gauge improvement, says Dr. Katherine Courtright, an instructor of medicine in pulmonary and critical care at the University of Pennsylvania. She is the study’s senior author.

There are many reasons that people are reluctant to sign a living will. “Many people don’t sign advance directives because they worry they’re not going to get any care if they say they don’t want [cardiopulmonary resuscitation],” says Courtright. “It becomes this very scary document that says, ‘Let me die.’ ”

Living wills also don’t account for the fact that people’s wishes may change over time, says Dr. Diane Meier, a geriatrician and the director of the New York-based Center to Advance Palliative Care.

“In some ways, the public’s lack of excitement about this is related to the reality that it’s very hard to make decisions about the kind of care you want in the future when you don’t know what that will be like,” she says.

Sometimes as patients age and develop medical problems, they’re more willing to undergo treatments they might have rejected when they were younger and healthier, Meier says.

“People generally want to live as well as they can for as long as they can,” she says. If that means going on a ventilator for a few days in order to get over a bout of pneumonia, for example, many may want to do that.

But if their living will says they don’t want to be put on a ventilator, medical staff may feel bound to honor their wishes. Or not. Although living wills are legal documents, medical staff and family members or loved ones can reinterpret them.

“At the moment, I’m very healthy,” Morrison says. If he were to become ill or have a serious accident, he’d want to weigh life-saving interventions against the quality of life he could expect afterwards. “If it were an end-of-life scenario, I don’t want to resuscitated,” he says.

If someone’s wishes change, the documents can be changed. There’s no need to involve a lawyer in creating or revising advance directives, but they generally must be witnessed and may have to be notarized.

While living wills can be tricky, experts strongly recommend that people at least appoint a health care proxy. Some even suggest that naming someone for that role should be a routine task that’s part of applying for a driver’s license.

“Treatment directives of any kind all assume we can anticipate the future with accuracy,” says Meier. “I think that’s an illusion. What needs to happen is a recognition that decisions need to be made in real time and in context.”

That’s where the health care proxy can come in.

But to be effective, though, people need to have conversations with their proxy and other loved ones about their values and what matters to them at the end of life.

They may tell their health care proxy that they want to die at home, for example, or that being mobile or able to communicate with their family is very important, says Jon Radulovic, a vice president at the National Hospice and Palliative Care Organization.

Some may opt to forgo painful interventions to extend their lives in favor of care that keeps them comfortable and maintains the best quality of life for the time that remains.

“The most important thing is to have the conversation with the people that you love around the kitchen table and to have it early,” says Ellen Goodman, a Pulitzer Prize-winning writer who founded The Conversation Project, which provides tools to help people have conversations about end-of-life issues.

Morrison says he’s talked with his health care proxy about his wishes. The conversation wasn’t difficult. Rather than spell out precisely what he wants done under what circumstances, Morrison is leaving most of the decisions to his health care proxy if he can’t make his own choices.

Morrison says he’s glad he’s put his wishes down on paper. “I think that’s very important to have. It may not be a disease that I get, it may be a terrible accident. And that’s when [not knowing someone’s wishes] becomes a crisis.”

Complete Article HERE!

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08/12/17

Tidy transition can ease caring for dying parent

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By Glenn Ellis

There are two things that movies consistently get wrong: sex and death. Unfortunately, as a society, we spend far too much thinking of sex, and too little time devoted to death – especially of a parent.

Caring for a dying parent is a difficult and emotionally challenging task. However, effective communication can ease the transition.

Movies consistently present death in a false or unrealistic way. Real-life death is not always dignified, simple or tidy. Indeed, death can be upsetting, messy, painful and traumatic experience for all parties involved.

Complications can arise during the course of an illness can lead to increasingly worsening circumstances. Immobile or semi-mobile patients may feel determined to walk and my try to get out of bed. As a result, some may fracture or break their hip. As bad as terminal illness is, additional complications can make quality of life worse. Patients may become restricted to their bed and may rely on a catheter.

Regardless of the attempts to prevent it, as soon as they return home, complications such as a yeast infection or urinary tract infection may occur. This causes a patient to become even more frightened and restless. How is anyone supposed to take care of a dying person? It’s a fairly straightforward to concept “nurse” a person back into good health, but how is anyone supposed to “nurse” them into death with dignity and compassion?

Then there’s the morphine. Dying parents may often feel agitated and restless, so much so that they might try getting out of her bed. The morphine may help to calm them down. Is it unethical to give it to them to address mental rather than physical pain? Although her hip fracture causes pain. Many children give their parents morphine more for their parents restlessness.

The only organ donors you see on “Grey’s Anatomy” are car accident fatalities. No one ever talks about mulling over whether or not to give someone’s organs away while they’re still conscious in another room.

These are the kinds of issues that children with dying parents struggle with every day. Many adult-children caregivers believe that their ill parent wouldn’t have wanted to live this kind of existence. They may have stated that they didn’t want a lingering, drawn-out death. This is why advance directives are so essential.

If you’re like most families (including mine), generally, the care of a dying parent falls on the shoulders (and back) of one sibling or family member. Although it’s rare for siblings to share parent care equally, it’s a family responsibility. Not treating it as such “will haunt you” later on. Even if you live far away from your ailing parent, you can still help out.

From ordering car service a couple times a week to paying bills online, anything that can be done via telephone or internet is within your reach, she notes. Just calling your mom more often “so she’s not so needy” can provide relief to the sibling carrying the heaviest load, says Russo, as can making the trip to be with your mom whenever possible, so your sibling can take time off.

End-of-life care is something that few people like to think about, let alone discuss. Avoiding the subject until it’s unavoidable, however, can be a “huge mistake” with devastating consequences for the sibling relationship. Call a family meeting when your parents are still healthy.

Such a conversation might start this way: Remember aunt so-and-so, and how our cousins were still fighting when she was on the respirator and they wouldn’t let her die and how painful that was for everybody?

We don’t want that to happen in our family.

Mom, Dad, do you have a living will? Have you assigned somebody to be the healthcare proxy? Though they may attempt to deflect such questions: nudge further. If you were on a respirator or in really bad shape, would you want us to do everything possible, or would you just want to go quietly? Who should make that decision? We’ll all want to do what’s right, but we may have different feelings.

It’s time to start an honest and open discussion of what dying really means. How can we help someone we love to pass on? What do “extraordinary measures” mean to different people? To some, it may mean CPR. For others, it might mean giving any medications that can help. Furthermore, what constitutes a tolerable living standard? For instance, what happens when someone is bedridden or unable to control their bowels?

There are few things more difficult than saying goodbye to a dying parent. These questions are undoubtedly tough ones. In most cases, they’re mentioned far too late.

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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07/25/17

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

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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.

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07/19/17

First, Sex Ed. Then Death Ed.

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FIVE years ago, I taught sex education to my daughter Tessa’s class. Last week, I taught death education to my daughter Sasha’s class. In both cases, I didn’t really want to delegate the task. I wanted my daughters and the other children in the class to know about all of the tricky situations that might await them. I didn’t want anyone mincing words or using euphemisms. Also, there was no one else to do it. And in the case of death ed, no curriculum to do it with.

When Tessa heard I’d be teaching sex ed to her fellow seventh graders, she was mortified. My husband suggested she wear a paper bag over her head, whereupon she rolled her eyes and walked away. When the day arrived, she slunk to the back of the room, sat down at a desk and lowered her head behind her backpack.

As I started in, 13 girls watched me with trepidation. I knew I needed to bring in the words they were dreading right away, so that we could move on to the important stuff. “Penis and vagina,” I said, and there were nervous giggles. A pencil dropped to the floor. With the pressure released, I moved on to talking about contraception, saying no, saying yes, pregnancy, sexually transmitted diseases, even roofies. By the end of the hour, hands were held urgently in the air, and my daughter’s head had emerged from behind her backpack.

Sexual education programming was promoted by the National Education Association as far back as 1892 as a necessary part of a national education curriculum. As information spread and birth control became increasingly available, unwanted pregnancies dropped, and rates of S.T.D.s plummeted. In this case, knowledge really is power.

I believe that this is true of death, too.

I am a doctor who practices both critical and palliative care medicine at a hospital in Oakland, Calif. I love to use my high-tech tools to save lives in the intensive-care unit. But I am also witness to the profound suffering those very same tools can inflict on patients who are approaching the end of life. Too many of our patients die in overmedicalized conditions, where treatments and technologies are used by default, even when they are unlikely to help. Many patients have I.C.U. stays in the days before death that often involve breathing machines, feeding tubes and liquid calories running through those tubes into the stomach. The use of arm restraints to prevent accidental dislodgment of the various tubes and catheters is common.

Many of the patients I have cared for at the end of their lives had no idea they were dying, despite raging illness and repeated hospital admissions. The reasons for this are complex and varied — among them poor physician training in breaking bad news and a collective hope that our technologies will somehow ultimately triumph against death. By the time patients are approaching the end, they are often too weak or disabled to express their preferences, if those preferences were ever considered at all. Patients aren’t getting what they say they want. For example, 80 percent of Americans would prefer to die at home, but only 20 percent achieve that wish.

Many of us would choose to die in a planned, comfortable way, surrounded by those we love. But you can’t plan for a good death if you don’t know you’re dying. We need to learn how to make a place for death in our lives and we also need to learn how to plan for it. In most cases, the suffering could have been avoided, or at least mitigated, by some education on death and our medical system. The fact is that when patients are prepared, they die better. When they have done the work of considering their own goals and values, and have documented those preferences, they make different choices. What people want when it comes to end-of-life care is almost never as much as what we give them.

I am a passionate advocate for educating teenagers to be responsible about their sexuality. And I believe it is past time for us to educate them also about death, an equally important stage of life, and one for which the consequences of poor preparedness are as bad, arguably worse. Ideally this education would come early, well before it’s likely to be needed.

I propose that we teach death ed in all of our high schools. I see this curriculum as a civic responsibility. I understand that might sound radical, but bear with me. Why should death be considered more taboo than sex? Both are a natural part of life. We may think death is too scary for kids to talk about, but I believe the consequences of a bad death are far scarier. A death ed program would aim to normalize this passage of life and encourage students to prepare for it, whenever it might come — for them, or for their families.

Every year in my I.C.U. I see dozens of young people at the bedsides of dying relatives. If we started to teach death ed in high school, a student visiting a dying grandparent might draw from the curriculum to ask a question that could shift the entire conversation. She might ask about a palliative care consultation, for example, or share important information about the patient’s preferences that she elicited during her course. High school, when students are getting their drivers’ licenses and considering organ donation, is the perfect time for this. Where else do we have the attention of our entire society?

Last week, my colleague Dawn Gross and I taught our first death ed program in my daughter’s ninth-grade class at the Head-Royce School, a private, progressive (and brave) school in Oakland. In the classroom, we had some uncomfortable terms to get out of the way early on, just as I did in sex ed — death, cancer, dementia. We showed the teenagers clips of unrealistic rescues on the TV show “Grey’s Anatomy,” and then we debunked them. We described the realities of life in the I.C.U. without mincing words — the effects of a life prolonged on machines, the arm restraints, the isolation. Everyone was with us, a little tentative, but rapt.

And then we presented the material another way. We taught them how to play “Go Wish,” a card game designed to ease families into these difficult conversations in an entertaining way. We asked students to identify their most important preferences and values, both in life and as death might approach. We discussed strategies for communicating these preferences to a health care team and to their own families.

We were delighted by their response. It didn’t take them long to jump in. They talked openly about their own preferences around death. One teenager told another that she wanted to make sure she wasn’t a burden to her family. A third said he was looking forward to playing “Go Wish” with his grandfather, who recently had a health scare.

Dawn and I walked out with huge smiles on our faces. No one had fainted. No one had run out of the class screaming. The health teacher told us she was amazed by their level of engagement. It is my hope that this is only the first step toward generating wide public literacy about this phase of life, which will eventually affect us all. The sooner we start talking about it, the better.

Complete Article HERE!

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07/16/17

The Professionals Who Want to Help You Plan Your Death

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When events involve a lot of moving pieces, it’s common to bring in a specialist. We have planners for weddings, parties, corporate retreats, and more — people who help us nail down our goals, explain complicated rules and contracts, and take care of the logistics so we can focus on the parts that matter most. When it comes to the most difficult event of all, though, many of us are on our own. Enter end-of-life specialists, who make it their job to guide dying people and their families through all the details they never wanted to think about.

Michelle Acciavatti, a former neuroscientist and ethics consultant, is the woman behind Ending Well, a Vermont-based business that helps people plan, prepare for, and experience “their own good death.” After working in hospitals and in hospice care, Acciavatti says, she began to notice repeated problems with end-of-life care: patients and family members not feeling listened to, people feeling too afraid or uncomfortable to broach the subject of death, outright denial about what was coming. Through Ending Well, she now offers services to help her clients come to terms with mortality, whether that means caring for a dying loved one, mourning a miscarriage or stillbirth, or planning their own advance care

“My work is to help people face and embrace the fear that keeps them from living well,” she says. “I educate people about their options at the end of life, but, hopefully, I also help them learn about themselves.” To do that, Acciavatti helps people articulate their priorities around death — do they want a home funeral? have any last requests? what do they want their legacy to be? — and then works to convert those desires into a concrete plan.

In part, that means handling all the logistics (for example, she has the legal and practical knowledge to hold a home funeral in any U.S. state), but Acciavatti says that “values-based care planning,” or helping people figure out their quality-of-life goals, is the element that she finds most meaningful.

“A big fear for many people doing advance-care planning is dementia,” Acciavatti explains, “and many people say they wouldn’t want to live if they couldn’t recognize their family members. In my process, we try and unpack that statement. What does ‘recognize’ mean? Remembering their names? Their relationship to you? Or recognizing them as people who love you even if you can’t place them?”

“Since you can’t possibly plan for every possible medical outcome and potential intervention,” she adds, “I find it’s much more useful to do the self-work to understand your values for living well and find where the line is in that way.” For example, a person might initially shy away from the idea of a breathing machine, but change their mind once they begin to consider when in their disease progression they may need one.

Once a person figures all that out, the next step is making their wishes known. Acciavatti urges her clients to have “an ongoing and evolving conversation … with your family, your doctor, with anyone who might be involved or have an opinion about your care, so that they understand why you have made the plans you have made.”

Amy Pickard, whose Los Angeles–based company Good to Go! helps guide groups and individuals through end-of-life paperwork, agrees. “Most people don’t even talk about those things, let alone put their wishes down in writing,” she says. “Imagine how traumatizing that would be if suddenly your loved one needed you to make life/death decisions for them and you never talked about it before.”

Pickard founded Good to Go! after losing her mother, an experience that left her unprepared to navigate what she calls “the death duties.” “I was stunned to learn of all the work involved after someone dies,” she says.
“When you’re grappling with an unbearable reality, which is when your fiercest cheerleader, best friend, and the one who loves you the most on the planet is dead, the last thing you want to do is spend every waking moment encountering nonstop questions about the deceased person’s life and estate.”

But how do you make a long conversation about death seem like a fun way to spend a weekend afternoon? The answer, Pickard decided, was to recontextualize advance planning as a party, complete with upbeat playlists, food, and plenty of humor. “I joke that Good to Go! is like when you give your dog a pill wrapped in cheese,” Pickard says. “The pill is confronting your mortality and G2G! is the cheese.”

“Basically, Amy saved me,” says Erika Thormahlen, a client of Pickard’s. When the two women met in Los Angeles years ago, “it was occurring to me how little I knew about my mom’s wishes for end-of-life stuff … We were a don’t-ask-don’t-tell family in a way, and my mother both always wanted to remain positive and also never wanted to be a burden.” Worried about potential awkwardness when she raised the subject, Thormahlen asked her mother if it would be okay if “my pal Amy came over and we filled out some questions together.”

When Thormahlen’s mother passed away a month after Pickard’s visit, “the dozen notes I made informed both my handling of her memorial and how I try to honor her life,” Thormahlen says. “I feel very privileged to have been there — and Amy made it this wonderful memory I often return to.”

The Good to Go! “departure file,” as Pickard calls it, includes a template for a living will (a document outlining a person’s desires for their end-of-life medical care) and a booklet covering almost everything the living will doesn’t: contact information for doctors and business associates; bills, social-media passwords; plans for children and pets; instructions for what should be done with photos, journals, and other personal belongings; and funeral and body disposition wishes, from where to distribute ashes after a cremation to whether an obituary is desired and what photo ought to be used.

“It’s basically every question that came up after my mom died,” Pickard says. “Since she died unexpectedly, I had to guess. I don’t want anyone else to have to guess.”

Clients of Pickard’s can go through the departure file on their own time or during one of her Good to Go! parties, which she throws monthly in L.A.; she hopes to take the event on the road this summer.

Over in Vermont, Acciavatti of Ending Well also says she hopes to expand her services down the line: “I want to offer everything!” she says.
“Anything someone tells me they need — if it resonates with me I want to do it. Reiki, therapeutic massage, music therapy, aromatherapy … Holding space for people to create their own rituals, tell their own stories.”

“If I’ve done my work well,” she adds, “people are dying in the manner they chose.”

Complete Article HERE!

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