Tag: Advance Directives

Posted on

A good death

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

By Vivien Shiao

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

What a good death means

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

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

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

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

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

Planning for the end

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

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

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

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

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

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

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

Working with the law

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

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

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

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

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

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

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

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

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

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

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

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

Where there’s a will

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

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

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

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

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

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

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

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

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

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

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

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

A conversation about care

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

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

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

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

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

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

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

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

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

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

Beginning with the end

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

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

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

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

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

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

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

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

What you need to know

Will

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

Lasting Power of Attorney

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

Trust

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

Advance Medical Directive

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

Advance Care Plan

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

Complete Article HERE!

Posted on

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

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

By Ann Brenoff

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Complete Article HERE!

Posted on

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

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

By Debbie Reslock

[H]ow 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!

Posted on

When my dad was dying, we forgot to ask him how he wanted to live

Professionals arrived to do the job they were sent to do – take bloods, give drugs, request a hospital bed at home. They didn’t take the time to understand that what Dad wanted most was to be outside, to feel the sun, wind and rain on his face

By Sarah Dew

When it comes to end of life care, we talk about dying. But in my experience, care at the end of life should not be not about death – it should be about life.

My Dad was a man full of wonder for the world. He loved nothing more than being outside, on a mountain bike or with a camera in his hand. He preferred to have a few, meaningful and close friendships than a wide group of acquaintances. He didn’t like lie-ins, or mayonnaise. He had blue eyes, and a particularly aggressive form of colon cancer that killed him within three and a half months of diagnosis, aged 57.

Cancer car-crashed its way into all of our lives, and following in its wake were a merry-band of professionals ostensibly there to care for him. The arrival of new people at our doorstep was relentless. Suddenly, my father, a man who invested deeply in knowing and understanding people, was surrounded by people who didn’t know him at all. This was clear from the first of many district nurse visits to our home. The nurse didn’t know how recently and rudely cancer had come into our lives. “I guess you’ve been fighting this for a good while,” she said. She talked about her grandson’s visit the weekend before. She didn’t know how much Dad wanted to have grandchildren.

Professionals arrived to do the job they were sent to do – take bloods, give drugs, request a hospital bed at home. They didn’t take the time to understand that what Dad wanted most was to be outside, to feel the sun, wind and rain on his face. They told us they’d visit sometime the next day. And so we waited. And Dad lost another precious opportunity to be out in the world he didn’t want to leave.

Suddenly, my strong, capable, energetic family were paralysed in a system that we didn’t understand, and that didn’t understand us. We had to wait for information, to fire fight the latest deterioration, and desperately live out the time we had left once the calls and the visits were done.

After my Dad died, I began to work on a programme to improve end of life care in South London. When it comes to improving end of life care, calls are repeatedly made for more palliative care services, for better access to pain control, for better planning. All of these help – no-one should die in pain, in a place they did not choose, and without the support they need.

But the end of life is not just about dying. It is about living well, right up until the end. And throwing more professionals at “the problem” of dying will not enable us to die well (nor do we have the resources to do so). We must start with what it means to live well – for my Dad, to be outside, with the people he loved to share his life with, reflecting on the wonder of a life well lived and the pain of a life lost too soon.

None of this is expensive to provide. But it requires fundamentally reframing what we understand care at the end of life to be.

Caring for people at the end of life means enabling people to live out their final days as they wish, helping them to reflect on the life that they’ve lived, and supporting them with the emotional and physical challenges that dying forces us to confront. Determining what this care looks like for each individual, and how it is provided, need not be led exclusively by professionals. In fact, it can and should be a partnership with our families, friends and neighbours.

As the power of medicine to extend and protect life advances year on year, we’ve handed responsibility for guarding against death to medical professionals. So too have we asked these professionals to “own” dying – to set the agenda about what end of life care looks and feels like, to lead the planning and choices we make, to initiate conversations, and even to make judgements about the best course of action. This expectation is unfair on those professionals, on those that are dying, and those that love them. Death is not simply a medical phenomenon – it is a social and emotional one, and that balance should be reflected in how we collectively set the agenda for what shape end of life care takes.

An army of professionals cannot meet all the needs of the dying and the bereaved. Professionals must share their knowledge with the loved ones that want to care, and we must all be courageous and upskilled in supporting our friends, families and neighbours, in death as in life. Our society and our health service must recognise the role we can, and must, all play in supporting people that are dying to live well, right until the end.

Complete Article HERE!

Posted on

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

By Patrick Connole

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

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

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

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

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

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

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

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

Complete Article HERE!

Posted on

Plan for your death; be wise like Wally was

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

By Linda Norlander

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

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

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

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

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

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

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

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

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

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

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

Complete Article HERE!

Posted on

We’re Bad at Death. Can We Talk?

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

By Dhruv Khullar

[H]er last conversation should not have been with me.

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

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

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

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

“O.K.,” she said. “Do it.”

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

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

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

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

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

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

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

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

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

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

Complete Article HERE!