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.

Complete Article HERE!

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07/14/17

We’re making it too hard to have a ‘good’ death

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By Joshua A. Rolnick, David A. Asch, and Scott D. Halpern

More and more Americans say they want a “good” death, which usually means dying peacefully at home, surrounded by loved ones. Documents called advance directives can help them achieve that goal by increasing the chances that the care they receive near life’s end aligns with their goals and values. Unfortunately, advance directives have been mired by legalities that limit their utility and even discourage their use. It’s time for that to change.

Although most Americans say they prefer to emphasize comfort when they’re near death, aggressive treatment remains the norm in American health care. In the last month of life, half of all Medicare patients visit an emergency room, one-third are admitted to an intensive care unit, and many have surgery. Ironically, this disconnect between what people want and what they often get is facilitated by well-meaning but misguided laws governing the completion of advance directives.

Advance directives have two parts. The first is a living will that spells out an individual’s wishes for end-of-life care. It might say, for example, whether or not she wants to be placed on a ventilator, or, perhaps more importantly, what types of health states she would consider to be intolerable. The second part is a health care power of attorney that specifies the individual’s chosen decision-maker. By law, advance directives usually require the signatures of two witnesses or a notary, with specific rules varying by state. In some states, approved templates drafted by lawmakers — not clinicians — are the preferred ones.

Only one-third of Americans with advanced illnesses have advance directives, as we found in a recent systematic review in the journal Health Affairs. At the hospitals in Philadelphia where we work, seriously ill patients rarely have directives in their medical chart. For a research study, one of us (S.D.H.) screened more than 9,000 patients at dozens of clinics across Pennsylvania who were expected to live less than two years, and found that only 2 percent had advance directives in their medical records.

Sometimes the documents remain home in a drawer, unavailable to family members and physicians as they gather in the hospital to make decisions. But even when they are available, they often give poor guidance about an individual’s true wishes. As we argue in a recent article in the New England Journal of Medicine, each of these failures can be traced, in part, to the law.

It may seem intuitive that something as important as an advance directive should receive special legal protections, but experience reveals the opposite.

First, laws make advance directives harder to complete. An individual can sign a consent form authorizing major surgery during any doctor’s visit, but can’t create an advance directive unless accompanied by two witnesses or a notary. This need for witnesses or notarization seems to reduce the likelihood that seriously ill individuals who want to complete an advance directive will ultimately do so.

Second, the barriers to creating advance directives also make them more difficult to change. That can make the living will nearly immutable, even though end-of-life goals often evolve with experience and circumstances.

Third, outdated laws regarding advance directives may prevent us from leveraging newer technologies to improve care. We and others have developed web-based platforms that facilitate the completion of advance directives and their integration into electronic medical records. Yet these platforms typically require written signatures rather than electronic ones so the document aligns with state laws. That’s a problem. After one of our own family members — a 99-year-old man who recently moved to an assisted living facility — completed an advance directive online, he was frustrated to learn he then had to print it out, sign it, obtain the signatures of witnesses, and scan it back in. As we found in another recently completed randomized trial, only 25 percent of people who completed an advance directive online subsequently obtained the written signatures on a printed form so the document would satisfy state laws.

Finally, the current rules around completing advance directives shift the process from the doctor’s office to the lawyer’s. That doesn’t make sense. Far more people have doctors than lawyers; they see doctors as more relevant to these decisions than lawyers; and the cost of a visit to the doctor might be covered by insurance, but a visit to a lawyer won’t.

Soliciting the advice of a lawyer to complete what is fundamentally a medical directive is like getting advice from your doctor about completing your taxes.

An advance directive must incorporate a nuanced understanding of an individual’s medical history, treatment options, and foreseeable setbacks, which only a clinician can provide. Further, completing a directive in a doctor’s office helps ensure that the form is accessible in the person’s medical chart. And when people are dying and their circumstances come into sharp focus, they are typically with their doctor, not their lawyer.

Lawyers may argue that extra legal protections around advance directives prevent fraud and send a clear signal to courts. Yet there is no evidence that witnesses or notaries reduce fraud. And it is rare for an advance directive to trigger a lawsuit — our large medical centers haven’t had such a case in at least 20 years. In any event, courts frequently adjudicate disputes over medical care without the benefit of notarized documents, and are equipped to do so whether the subject is end-of-life care or another matter.

The good news is that reform requires little effort. Advance directives are controlled by state law. We urge states to make three minor modifications:

  • Eliminate requirements for witnessing and notaries. After all, we don’t require them for other high-stakes medical decisions.
  • Clarify that electronic signatures and non-statutory forms are valid, just as they are allowed for other important documents.
  • Minimize differences between states. An individual’s wishes for end-of-life care don’t change because he moves from Arizona to Maine.

With modest changes to well-intended but counterproductive laws, advance directives may help give people the voice that they and their family members deserve near the end of life.

Complete Article HERE!

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06/10/17

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

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

By Debbie Reslock

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

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

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

Why You Need a Proxy

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

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

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

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

Choose the Right Person as a Health Care Proxy

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

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

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

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

How to Choose the Best Health Care Proxy

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

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

From Doctor to Patient

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

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

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

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

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

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

Put It on Paper

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

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

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

Looking Ahead

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

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

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

Boomers Leading the Way

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

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

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

Complete Article HERE!

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