Philosophy of Living – Page 141 – The Amateur's Guide To Death & Dying

August 2, 2016August 2, 2016

BEING THERE: A death doula’s mission

By Ellen McCarthy

Craig Phillips has found that his work as a death doula has given him a greater appreciation for life.

Before he enters the room, Craig Phillips pauses for a deep exhale.

“Just to let everything go,” he says. “And to remember that I’m here for them.”

Until he walks in, he won’t know whom, exactly, he’s about to see. Today it’s an elderly woman in a blue hospital gown. Eyes closed. Jaw dropped open. Breathing loud and labored, but regular.

There is a little green circle by her name on the white board in the nurses’ station. Hospice center code for “actively dying.”

“She doesn’t have anyone with her,” a nurse says. So Phillips goes, pulls a chair up to her bed and introduces himself.

“I’m not here to poke or prod you,” he says softly. “I’m just here to be with you. I’m just here to sit with you.”

The work of a death doula — Phillips’s work, now — is primarily about presence. He is there to ease the passage from this world to the next. And he knows that the most valuable thing he can offer anyone taking that most solitary of journeys is his company. So he sits, silently wishing them peace and comfort.

Especially with patients who can no longer speak, Phillips has learned to slip his hand beneath theirs, palm to palm, rather than rest it on top. This way, he says, “you get an understanding of how well wanted you are.” When his grip is returned, he knows that he is welcome.

Phillips operates alone, but he is part of a growing army of volunteers and professionals who call themselves death doulas. (Some, opposed to that term, prefer end-of-life doulas, soul midwives or transition coaches.) And like the childbirth doulas from whom they draw their name, their mandate is to assist and accompany. Their patients’ experience may be quieter, more sorrowful, but it is no less sacred. Or scary.

As the baby boomers move into retirement, fresh consideration is being given to what it means to grow old, which measures to take to treat illness and, ultimately, how we die. There’s a growing recognition among hospice workers and palliative-care givers that pain management is not enough. That the spirit must be attended to as much as the body. And that the soon-to-be-bereaved need help along with the dying.

It’s out of this recognition that death doulas are emerging. Most say they feel almost inexplicably called to the role. And profoundly touched by it.

A good death

On a sunny spring day in Alexandria, Virginia, 30 women and one man sit in a windowless hotel conference room, having traveled from all over the East Coast and paid $600 to learn to serve as death doulas.

“Our role is to walk alongside” the dying “in their journey,” says Henry Fersko-Weiss, president of the International End of Life Doula Association (INELDA), one of several organizations offering certification in the field.

The weekend-long training will cover the best ways to touch a dying person, when to use aromatherapy and guided visualizations, strategies to relieve overburdened family members, how to organize a “legacy project” to help capture the patient’s life, assisting at the moment of death and helping loved ones process their grief in the weeks that follow.

On the first morning, Fersko-Weiss, a social worker who worked with hospice facilities for decades before creating an end-of-life doula program in 2003, asks each of the students to recall a death that affected them. How it smelled and looked and felt. How it shaped their concept of what constitutes a “good death.”

One woman talked about her daughter’s stillborn baby.

“That was the hardest hurt I ever felt,” she said. “I didn’t understand how you could take a baby who was full-term.”

Fersko-Weiss nodded and observed that she may be able to transform her pain into something that could aid dying patients and their families.

“If we can touch that place of angst and anguish and despair,” he said, “it may help us to be more present to other people experiencing it now.”

Later, the prospective doulas talk about their reasons for coming. Several had had negative experiences with the death of a close relative. A few were birth doulas who wanted to assist with the exit from, as well as the entrance into, life. One woman had suffered a brain injury and a near-death experience. All said that they wanted to be of service in a way that would make this final transition somehow better for others.

They will be called upon to fill all kinds of roles, Fersko-Weiss told them. Sometimes patients may need help with physical care; other times, families will need assistance with errands or household chores. In all cases it will be a doula’s job to listen, without judgment, to honor the experience of both the dying person and their loved ones, and to facilitate meaningful interactions between them.

“As a doula, it’s important to encourage people to say everything they need to say,” Fersko-Weiss explains, “so that they don’t look back and really regret it.”

Beautiful souls

Craig Phillips’s path to end-of-life doula work wasn’t straight, but he thinks he was always inching toward it. He grew up in Wilkes-Barre, Pennsylvania, next door to a cemetery that served as his playground. In college, he had a chance meeting with Elizabeth Kubler-Ross, the famed psychiatrist whose groundbreaking work shaped our modern understanding of death. And all through his life, Phillips has had an intense awareness of his own mortality.

At 61, he has the look and presence of a yogi, but he spent most of his adult life in the corporate world. Several years ago, his sister called, saying that her ex-husband was suffering from advanced ALS and living in a facility very close to Phillips’ Baltimore home. So Phillips went to see him. And kept going, two or three times a week, for the last 2 1/2 years of the man’s life.

“I’d bring him flowers,” he recalls. “I’d tell him stories. I’d take oil over and rub his feet, stuff like that. Just devoted myself to him. And it was a beautiful thing.”

A man in Phillips’ running club mentioned volunteering as a death doula, so when he retired last fall, he linked up with Gilchrist Hospice Care, which serves more than 750 patients daily in the Baltimore area and established its own end-of-life doula program in December 2009. It has since grown to more than 150 volunteers.

After 20 hours of training in January, Phillips spent a morning shadowing a mentor doula at Gilchrist’s facility in Towson.

“We walked into a patient’s room, and she said, ‘Isn’t this person beautiful?’ I could see that they were. And she said, ‘Yes, all my patients are beautiful,’ ” he recalls. “You walk into a room and there’s someone there with their mouth open, looking very near death. Perhaps no teeth in their mouth and a three-day beard or whatever. And I look at these souls and they’re beautiful. It’s the oddest thing. Their guard is down. They’re just who they are in their most real, beautiful state.”

Phillips has helped long-term-care patients communicate with a letter board and even washed a dog for one family. On his weekly visits to an elderly man who was still alert, Phillips brought videos of the patient’s favorite big band performances.

But with many patients, Phillips just sits, quietly meditating and sending good wishes. He tells them that they are safe. And that they are not alone. One woman was unable to speak, but when he said goodbye after three hours, “she mouthed the words ‘Thank you’ and held out her hands like I was dear to her,” he says.

The work has also produced an unintended side effect. It has pushed Phillips’ awareness of mortality even further to the forefront of his mind.

And happily so.

“The more immediacy, for me, that I have of this,” he says, “the more appreciation I have for every day, every minute.”

Complete Article HERE!

July 31, 2016July 31, 2016

The way we die: elderly people need end-of-life options

by Mario Garrett

It is illegal to help someone kill themselves in Malta. But what if someone is dying in great pain?

Opioids usually administered in these times are sometimes not enough to stop the agonal stage of death. Agony comes from the Greek word ‘to struggle’. The process of dying, as seen by an observer, is that of a struggle. The stage right before an older person dies is often accompanied by disorientation, struggling to breathe with long pauses in between loud, laboured breaths – called Cheyne-Stokes breathing.

Sometimes a death rattle is heard in the breathing when there is liquid in the lungs. Sometimes the person may start convulsing. This agonal process is eloquently described in the Tibetan Book of the Dead. This is not the way we want to die.

In one study looking at what people said is their ideal way to die, Gilbert Meilaender from Valparaiso University in Indiana suggested a one-word answer: Suddenly! The idea is to live as long as possible at the peak of our vigour and then, when the time has come, to die quickly and painlessly. But this is not the way we die.

With our advancing and encroaching technology, it is more likely that dying will become a more protracted affair despite our wishes. Surprisingly, when we try and hasten the process we, as a society, have responded by punishing those who are trying to help us achieve a painless death.

In the US, one of my neighbours, Sharlotte Hydorn, before her death in 2013, gained a measure of notoriety by offering to mail you, for only $60, a package containing GLADD exit bags – Good Life and Dignified Death. The kit included a plastic bag, medical tubing, two canisters of helium and instructions on how to commit suicide – by placing the bag on your head and filling it with helium, which deprives the body of oxygen. The body does not know it is being denied oxygen since the helium mimics the oxygen molecule. You die peacefully. In the US, more than a quarter of us will likely die in an emergency room, our final departure looking more like a chaotic medical soap opera. Our death will be seen as another medical failure. For the majority of us, this is not what we want or what we deserve.

In Europe and the US, hospice care is gaining ground as the gold standard for end-of-life care. The Malta Hospice Movement is today caring for over 1,000 patients and their families. However, Malta Hospice, as most hospice services, is used by too few people. And when these services are used, they are used too late. The result is that most older adults still experience widespread distress in the final stages of life.

The result is that we deal with dying underhandedly. In hush hush tones we conspire to give the dying person a good death. In Malta, Jurgen Abela from the University of Malta’s department of family medicine conducted a survey of 160 doctors. The results are revealing. One in seven doctors were asked by their patients to help them die. Despite this, nine out of 10 would refuse such requests for moral reasons – since a majority were Catholic and this was important to them – despite half of these same doctors accepting the right of individuals to hasten their death. Such schizophrenic response harbours a sense of bigotry.

The religious fervour to curtail euthanasia has not slowed the growing number of states that have legalised physician assisted death. With four US states and four countries that today openly and legally authorise active assistance in dying of patients, the list of states/countries is growing.

There is nothing absolute in these situations. Physicians cannot determine with infallible certainty that someone is going to die, sometimes the medication used does not work as intended, or is delayed, the process of injecting a person with enough opioids to kill them is not family-friendly and it is killing without consent. These are all valid criticism that pose moral challenges.

If we look at how physicians die, what we find is that a majority of them do not go for invasive treatment if they know that it is unlikely to improve the outcome. They chose quality of life over quantity of life and self-medication is high. It takes a special person to go through with euthanasia.

In the state of Oregon in the US, only a small fraction goes through physician-assisted-suicide. In 2013, a total of 71 people went through physician-assisted-suicide out of nearly four million people in Oregon. In Malta this would translate to less than five people a year. There is no ‘thin end of the wedge’. These people, nearly exclusively white, were educated with a diagnosis of cancer (since we know a lot about the progression of this disease.)

Different older adults need different support. Some end-of-life options may not appeal to you, but the option needs to be made available for others that it might help. Euthanasia is about diversity of needs. Not everyone might want or need it but it should be an option for those very few for whom it might help alleviate the pain of dying.

Complete Article HERE!

July 25, 2016July 27, 2016

How to Die Peacefully, Part 3 Making the Most of Your Last Days

Look for Part 1 and 2 of this series HERE and HERE!

1. Do what feels natural.

There’s no right or wrong way to die. For some people, it may be desirable to spend as much time with friends and family as possible, while others may find comfort in solitude, choosing to face things alone. Some people might want to kick up their heels and make the most of the last days, while others may want to go about the same basic routine.

Don’t be afraid to have fun, or to spend your time laughing. Nowhere does it say that the end of life is supposed to be a somber affair. If you want to do nothing more than watch your favorite football team and joke with your relatives, do so.
It’s your life. Surround yourself with the things and the people that you want to be surrounded with. Make your happiness, comfort, and peace your priority.^[6]

2. Consider pulling away from your work responsibilities.

Few people receive a terminal diagnosis and wish they’d spent more time at the office, and one of the most common near-death regrets is of working too much and missing out. Try not to spend the time you have left, if there isn’t much, doing something you don’t want to be doing.

It’s unlikely you’ll be making a marked financial difference for your family in a short amount of time, so focus on what will make a difference: addressing the emotional needs of yourself and your family.
Alternatively, some people may find energy and comfort in going about the routine of work, especially if you’re feeling physically strong enough to do so. If it feels natural and reassuring to keep working, do it.

3. Meet with friends and loved ones.

One of the biggest regrets those who are facing death express is not staying in touch with old friends and relatives. Remedy this by taking the opportunity to spend a little time with them, one-on-one if possible, and catch up.

You don’t have to talk about what you’re going through if you don’t want to. Talk about your past, or focus on today. try to keep things as positive as you want them to be.
If you want to open up, do so. Express what you’re going through and release some of the grief you’re experiencing with people you trust.
Even if you don’t have much energy for laughter or conversation, just having them sit by your side can bring you worlds of comfort.
Depending on your family situation, it might be easier to meet with people in big shifts, seeing whole families at once, or you may prefer focusing on individual meetings. These have a tendency to help slow down time, focusing on quality, rather than quantity. This can be a great way of maximizing the time you have left.

4. Focus on unwinding your relationships. It’s common for those near death to want to uncomplicate complicated relationships. This can mean a variety of things, but it generally means trying to resolve disputes and go forward less burdened.

Make an effort to end any fights, arguments, or misunderstandings so that you can move forward. You shouldn’t engage in arguments and keep fighting, but rather, agree to disagree when necessary and end your relationships on a good note.
While you probably can’t be around the people you care about all of the time, you can plan to see them in shifts, so that you rarely feel alone.
If you can’t see your loved ones in person, making a phone call to someone you care about can make a difference as well.

5. Decide how much you want to reveal.

If your health situation is unknown to your friends and family, you may elect to let everyone know what’s going on and keep them up to date, or you may prefer keeping things private. There are advantages and disadvantages to each choice, and it’s something you’ll have to decide for yourself.

Letting people know can help you get closure and feel ready to move on. If you want to grieve together, open up and let your friends family in. You can tell them individually to make it feel more personal, and tell only those people that you really care about, or make it more public. This can make it difficult to avoid the issue and focus on lighter subjects over the next weeks and months, though, which is a negative for many people.
Keeping your situation private can help to maintain your dignity and privacy, a desirable thing for many people. While this might make it difficult to share and grieve together, if you feel like this is something you want to take on alone, you might consider keeping it private.

6. Try keeping things as light as possible.

Your final days probably shouldn’t be spent pouring over Nietzsche and contemplating the void, unless you’re the sort of person who finds pleasure in these things. Let yourself experience pleasure. Pour yourself a glass of whiskey, watch the sunset, sit with an old friend. Live your life.

When you face death, you don’t have to make an extra effort to come to terms with it. It will come to terms with you. Instead, use the time you have left to enjoy the people and things you enjoy, not to focus on death.

7. Be open with what you want from others.

One thing you may have to deal with is the fact that the people around you are having trouble coping with your death. They may look even more upset, hurt, and emotional than you feel. try to be as honest as seems kind with your family, when discussing your feelings and desires.

Though you may want nothing more from them than comfort, optimism, and support, you may find that they will be having trouble in their own grief. That’s perfectly natural. Accept that people are doing their best and that they’ll need a break sometimes, too. Try your best not to be angry or disappointed at how they’re reacting.
You may find that some of your loved ones are showing little emotion at all. Don’t ever think that this means that they don’t care. It just means that they are dealing with your health quietly, in their own way, and that they’re trying not to upset you with how they feel.

8. Talk to a religious advisor, if necessary.

Talking to your pastor, rabbi, or other religious leader can help you feel like you’re less alone in the world and that there’s a path laid out for you. Talking to religious friends, reading religious scriptures, or praying can help you find peace. If you’re well enough to attend your church, mosque, or synagogue, you can also find peace by spending more time with people in your religious community.

However, if you don’t subscribe to a religion, don’t feel compelled to change your mind and to believe in the afterlife after all if that’s not really true to who you are. End your life as you’ve lived it.

Complete Article HERE!

July 24, 2016July 23, 2016

How to Die Peacefully, Part 2 Making Arrangements

Look for Part 1 of this series HERE!

1. Prepare an advance directive.

An advance directive is basically just a written document or a series of documents explaining what you want to have happen during your end-of-life care. It may outline a variety of topics, including your wishes for your care, should you become incapacitated, as well as naming proxies and a power of attorney.

These documents will need to be drawn up by attorneys and notarized. These aren’t likely things that you’ll want to have to spend a lot of time dealing with yourself, so it’s common to delegate these tasks to others.

2. Prepare for the distribution of your estate.

There’s a lot of comfort in knowing that you’ve taken care of everything ahead of time and haven’t left big or stressful decisions to be made after you’re gone. If you’re up to it, it’s important to have legal documents drawn up..

A living will describes the type of healthcare you hope to receive and whether or not you’d like to remain on life support, and under what circumstances, should you become incapacitated and unable to make your own decisions. Living wills can be prepared by attorneys and should be prepared ahead of time.
Last wills are designed to designate property to beneficiaries, assign guardians for minor children, and elucidate any last wishes. This is somewhat different than a living trust, which will transfer property immediately, as opposed to after your death.^[3]

3. Consider naming a health-care proxy.

In some cases, it may be good for you to delegate these responsibilities instead to a proxy, in the event that you’re unwilling or incapable of making these decisions for yourself. This is often an adult-aged child or spouse, who will be tasked with making choices regarding your health care as things progress.

4. Consider naming a health care power of attorney, if necessary.

In some cases, it may be difficult to choose or assign proxy responsibilities to a private party, and you may wish instead to assign them to an attorney. This is extremely common and can be a relatively stress-free way of turning over technical responsibilities to someone else, allowing you to deal with your own comfort and emotional responsibilities.^[4]

A health care power of attorney is different than a general power of attorney, which provides for financial assistance after death. While both of these may be appropriate options, it’s important to distinguish between them.^[5]

5. Make arrangements for your remains.

Though it may be slightly unnerving, it’s important to decide what you want to happen to your body after you die. There are many options and considerations, depending on your culture and religious background.

If you want a funeral, or religious ritual to be performed after your death, you may want to arrange the ceremony yourself, or delegate the responsibility to a loved one. Make the arrangements in terms of churches, funeral homes, if it helps you to find closure.
If you want to be buried, decide where you want to be buried and which family members you want to be buried near, if you haven’t made those decisions already. Secure a burial plot by making a down payment, and make arrangements with a funeral home in your area, if necessary.
If you’d like your body to be donated, make sure your donor status is up to date and accurate, according to your wishes. Contact the university or foundation to which you want your remains donated and make the necessary arrangements.

Tomorrow, Part 3 — Making the Most of Your Last Days

Complete Article HERE!

July 23, 2016July 27, 2016

How to Die Peacefully, Part 1 Managing Pain

Managing emotional and physical pain is the most difficult part of end-of-life care. You can learn to face the worst, when it comes, with dignity and grace. Make the necessary arrangements ahead of time and make the most of the time you have left.

1. Talk to your doctor about your pain management options.

It’s important to make your physical comfort a high priority in end-of-life care. Depending on your condition, you may be taking a variety of medications, or undergoing a variety of different procedures, so it’s important to discuss all treatment options with your doctor and ensure your comfort is provided in addition to these considerations.

Morphine is commonly prescribed to terminal patients, sometimes on a constant need-basis. While there’s some debate about whether or not morphine may shorten your life span, it’s efficacy as a powerful pain-reliever is proven. If you’re in serious pain, talk to your doctor about the option.^[1]
In some cases, it may be appropriate to pursue additional non-traditional methods of pain management, like holistic medicine, medical marijuana, or other non-western treatments. As long as these treatments don’t get in the way of other care you’re receiving, it’s likely they’ll be approved by your doctor, and might be worth a shot.^[2]

2. Be at home as much as possible.

While not everyone has the luxury of paying for home palliative care, you should think about what will bring you the most comfort and peace in your particular situation. There may be more help available in a hospital but you may feel more comforted and peaceful in your own home.

If you’re able to leave the hospital, try to get out as much as possible. Even going for short walks can help to get away from the beeping of hospital machines and be a nice change of pace.

3. Address the symptoms of dyspnea quickly.

Dyspnea, a general term for end-of-life breathing difficulties, can affect your ability to comfortably communicate, leading to frustration and discomfort. It’s something you can address and care for yourself, with some simple techniques.

Keep the head of your bed raised and keep the window open, if possible, to keep fresh air circulating as much as possible.
Depending on your condition, it may also be recommended to use a vaporizer, or to have additional oxygen supplied directly, through the nose.
Sometimes, fluid collection in the throat can result in ragged breathing, which can be aided by turning to one side, or by a quick clearing procedure your doctor can perform.

4. Address skin problems.

Facial dryness and irritation from spending lots of time in a prone position can be an unnecessary discomfort in end-of-life scenarios. As we get older, skin problems become more significant, making them important to address swiftly.

Keep your skin as clean and moisturized as possible. Use lip balm and non-alcoholic moisturizing lotions to keep chapped skin softened. Sometimes damp cloths and ice chips can also be effective at soothing dry skin or cotton mouth.
Sometimes called “bed sores,” pressure ulcers can result from prolonged time in a prone position. Watch carefully for discolored spots on the heels, hips, lower back, and neck. Turn from side and back every few hours to help prevent these sores, or try putting a foam pad under sensitive spots to reduce pressure.

5. Try to manage your energy levels.

The routine of being in the hospital will take a toll on anyone, and the constant blood pressure checks and IV drip can make it difficult to sleep. Be honest about your energy levels, any nausea, or temperature sensitivity you’re experiencing to get as much rest to be as energetic as possible.

Occasionally, in end-of-life scenarios, medical staff will discontinue these types of routines, when they become unnecessary. This can make it much easier to relax and get the rest you need to stay energetic and somewhat active.

6. Ask questions and stay informed.

It can get quickly overwhelming, confusing, and frustrating to be in the hospital and feel like you’re not in control of your own life anymore. It can be very helpful emotionally to stay as informed as possible by using your doctor questions regularly. Try to ask these types of questions to the doctor in charge:

What’s the next course of action?
Why do you recommend this test or treatment?
Will this make me more comfortable, or less?
Will this speed up or slow down the process?
What does the timetable for this look like?

Tomorrow, Part 2 — Making Arrangements

Complete Article HERE!

July 22, 2016July 22, 2016

In Search of a Peaceful Place to Die

A reluctance among Chinese to confront death makes life more difficult for the country’s terminally ill people.

turning-china’s-hearts-hospice-tbn — A staff member speaks with an old woman at Songtang Hospice, Beijing, July 19, 2016.

By Guo Quanzhi

In China there is a traditional belief that dying people bring bad luck.

Perhaps this explains why Song Tang Hospice, China’s first palliative care center, has had to move seven times in the past 29 years. Once, dozens of protesters, who blamed the hospice for bringing a curse on the neighborhood, attacked it and smashed its windows. Staff had to move more than a hundred terminally ill patients out at midnight. Some patients were taking their IV drips down the road with them, while others were huddled together crying, worrying about whether they would have a place to stay before they died. After hours of negotiations and a deal to increase the rent on the property, the masses retreated before sunrise.

A woman rests in bed at the Songtang Hospice, Beijing, July 19, 2016. The plants by the window were donated by hospice volunteers.

Li Songtang, the center’s founder, recalls that even his wife once balked at the thought of death: Two decades ago she required him change out of his work clothes before stepping into their home.

According to Li, the Chinese fear death so much that they’d prefer to run away from it rather than have to think about it at all. In the case of palliative care, cultural taboos related to death also play a significant role. Take, for example, the quintessentially Chinese concept of filial piety: Children who want to be seen to “do the right thing” for their ailing parents will reject palliative care and insist on more aggressive treatment, trying to preserve life at all costs.

Yet no matter how much they’re ignored, death and terminal diseases won’t be defied. Non-communicable ailments such as cancer, cardiovascular disease, and respiratory disease account for four out of every five deaths in China, according to statistics from the World Health Organization.

Palliative care — sometimes called “comfort care” because the aim is to provide relief, and not a cure, to patients with terminal diseases like cancer — is hard to come by in China. According to a 2015 global studyof death by The Economist, China ranked 69 out of 80 countries in terms of palliative health care environment — below average across five key indicators, including quality and affordability of care, as well as community engagement.

China’s medical system in general is still developing. While the country has pledged to provide affordable and high-quality health care to all citizens by 2020, it still only spends around 5.5 percent of its GDP on health care, while the United Kingdom, for example, spends 9 percent.

The Economist report described the development of palliative care in China as “slow” and access to it as “limited.” It noted that apart from the country’s 400 hospitals that specialize in treating cancer, there are only a handful of charity hospitals and community health centers that offer end-of-life care.

A woman sits in a wheelchair in the hallway of Songtang Hospice, Beijing, July 19, 2016.

Song Tang is one of these non-governmental facilities, and it has been the last stop for about 38,000 terminally ill patients, the youngest being a 5-month-old girl, since it opened its doors in 1987.

Chen Wenjie is one person whose death was made more bearable through palliative care at Song Tang. In 2008, Chen suffered a serious stroke and spent one month in the intensive care unit at Wujing Hospital in Beijing. She was tethered to an oxygen tank, a urinary catheter, and nasogastric tubes. Chen’s husband, Yu Haifeng, couldn’t bear to see her red, swollen body. “I’ve never seen her endure so much suffering,” Yu told Sixth Tone. “I was so afraid that her frail body would not be able to handle so much stress.”

The doctors gave Chen seven months to live. After her diagnosis, no hospital in Beijing would accept her — in public hospitals, patients are required to leave within 10 days of an operation.

Luo Jilan, the secretary-general of the Chinese Association for Life Care, described the Chinese medical system as “broken” in a phone call with Sixth Tone. For now, she said, patients who are forced to leave hospitals have few alternatives. “Without official policies and standards, hospice care has little hope of developing,” she added.

After a failed effort to take care of his wife at home, an increasingly desperate Yu turned to Song Tang on a friend’s recommendation.

There, Chen could benefit from greater care and attention. At Song Tang every ward has a nurse on call around the clock. At mealtime, nurses remind patients via intercom to eat and take their medicine. And twice a day care workers escort or wheel patients out to the hospice’s siheyuan, a kind of quadrangular courtyard common in Beijing, for some fresh air. Around midnight, nurses get up to change patients’ diapers.

A woman lies in bed with a photo of her husband behind her at Songtang Hospice, Beijing, July 19, 2016. Her husband visits the hospice every day.

Hospice care is not covered by public medical insurance, so each month Yu had to fork out 3,000 yuan (around $450) of his own money. Yu is still paying the bill for Chen’s stint in the hospital ICU. As a former railway worker, his monthly pension is 3,480 yuan.

Yu says that thanks in large part to the palliative care at Song Tang, his wife lived longer than they had expected and died a better death. “She didn’t go through much pain when she died,” Yu said. “There were no bruises on her body, and everything was peaceful.”

On average, patients spend about a month at Song Tang before they die.

When Sixth Tone visited Song Tang, patients in an eight-person ward were playing with their pet crickets, competing to see whose could chirp the loudest.

Shi Jingbin, 81, has dementia, and in 2013 he suffered a cerebral hemorrhage. Unable to stretch out, Shi’s blanket was pitched like a tent over his bent knees. Resting on his lap was a cardboard box of dog-eared philosophy books. Today, Shi can’t even recognize his son, but he still remembers Plato, Nietszhe, and Lao-tzu.

Song Tang’s Li said that when Shi first arrived, he was very lonely because no one could talk to him or understand him. “Emotional and spiritual support are so essential to these patients,” he said.

At Song Tang, around 70 percent of patients aren’t religious. “Without a spiritual life, it is hard to face death alone, fight fear, and control anxiety,” said Li.

A woman holds a doll donated by a hospice volunteer at Songtang Hospice, Beijing, July 19, 2016.

China’s aging society suggests that in the future the need to address palliative care will only grow with time. Still, establishing new hospice facilities often faces strong resistance from people who live near the proposed sites.

In what is fast becoming a trend across China, residents of the Yangpu and Pudong districts of Shanghai in 2014 protested against plans to build hospitals, and local officials caved to their demands. The health bureaus of both districts declined Sixth Tone’s interview requests.

Since 2012, the Shanghai municipal government has promoted government-subsidized hospice wards at community health centers. One such facility is the palliative ward at Jingan Temple Street Community Health Service Center, which is overseen by Miao Jun.

The ward only accepts patients with the most advanced stages of cancer due to a shortage of beds — there are only 25 in total. This means that, unlike hospice care in some other countries, patients who have terminal illnesses have to be turned away.

Miao is quick to cite another problem: a dearth of doctors who specialize in geriatrics. At medical schools in China there is little education about hospice care, he says. In addition, curricula usually center on curative treatment, and doctors are told to assign highest priority to extending a patient’s life, he says. In Miao’s view, quality of life considerations are broadly ignored.

In a country where violent conflicts between medical professionals and patients are common, doctors need to be especially mindful of how family and friends of the patient might react when their loved one dies.

A man stands by a window at the end of the hallway at Putuo District Shiquan Street Community Health Service Center, Shanghai, May 5, 2013.

Despite the challenges, the status of hospice in China is showing signs of improving — at least for Miao and his colleagues. The Jingan Temple Street center has not received a single complaint, and they’ve yet to have any disputes with patients since they opened in 2012.

There are some small signs of greater public acceptance of hospice care. A neighbor of the Jingan Temple Street hospice ward who declined to be named said he wasn’t bothered by the presence of the facility. “When people die, there is no hearse, no wreath,” he said. “The family just quietly takes the body of the deceased away, so the community doesn’t feel the aura of death.”

Complete Article HERE!

July 21, 2016July 20, 2016

Other Options to Hasten Your Death

Voluntary Stopping of Eating and Drinking (VSED)

To voluntarily stop eating and drinking means to refuse all food and liquids, including those taken through a feeding tube, with the understanding that doing so will hasten death. This is an option for people with terminal or life-limiting diseases who feel that with VSED their dying will not be prolonged. One of the advantages of this decision is that you may change your mind at any time and resume eating and drinking.

The US Supreme Court has affirmed the right of a competent individual to refuse medical therapies and this includes food and fluids. This choice is also commonly accepted in the medical community.

Before You Start

You must prepare to voluntarily stop eating and drinking. It’s not something that can or should be started the day it is first discussed.

Talk with your physician to let them know of your plans. Talk with your physician about all your medications, and ask if a sedative or pain medication will be available to keep you comfortable.
Complete an Advance Directive stating in writing that voluntarily stopping eating and drinking is your wish. Have your physician sign orders to withhold life-sustaining therapies and all resuscitation efforts.
Talk with friends and family members who might care for you during this process early about your wishes and why you may want to take this course. Their support is crucial. However, beware that for many people families are often opposed to VSED and can pose a barrier.
Finalize your business and financial affairs, make funeral and memorial plans, and gather your family members to share memories and say your good-byes.
If you reside in a care facility, discuss your wishes with the staff and nursing director. You will need the staff to provide support and assistance.
If you are already receiving hospice care, your team can help you prepare. If you are not on hospice, ask your physician for a referral to a local hospice provider. Usually hospice will provide supportive care once you start the process.
If your illness is not one that is likely to cause death within six months, arrange for a psychological evaluation for depression and decision-making capacity by a mental health provider. This will reassure family, physicians, and others that your mental status is sound and this decision well considered.

Process

You can live for a long time without eating, but dehydration (lack of fluids) speeds up the dying process. Dying from dehydration is generally not uncomfortable once the initial feelings of thirst subside. If you stop eating and drinking, death can occur as early as a few days, though for most people, approximately ten days is the norm. In rare instances, the process can take as long as several weeks. It depends on your age, illness, and nutritional status.

At first, you will feel the same as you did before starting VSED. After a few days your energy levels will decrease and you will become less mentally alert and more sleepy. Most people begin to go in and out of consciousness by the third day and later become unarousable. Hunger pangs and thirst may occur the first day, but these sensations are usually tolerable; discomfort can be alleviated with mild sedatives or other techniques such as mouth swabs, lip balm and cool water rinses.

Since dehydration will most likely be the cause of death, it is important not to drink anything once you start. Even sips of water may prolong the dying process.

I wish I could say [my father] died a gentle death. But I’m not so sure. I wish doctor-assisted death had been available to my father. I believe it is what he would have wanted.

—CHRISTOPHER STOOKEY, MD

We recommend that all medications be stopped except for those for pain or other discomfort. Stopping medications for heart problems or diabetes, for example, may speed up the process.

Finally, one of the advantages of VSED is that you may change your mind at any time and resume eating and drinking.

People who begin this process often express a sense of peace that they can finally “stop fighting.” Some people describe a sense of euphoria or pleasant lightheadedness. There is an analgesic effect caused by dehydration that may explain this response. With dehydration, people often need less pain medication, urinate less, have less vomiting, and breathe more easily due to decreased congestion.

Resources

Read this story, in which Christopher Stookey recounts his father’s death by voluntarily stopping eating and drinking.
Browse peer-reviewed, academic-journal articles on the subject.
Watch this video, in which Phyllis Shacter describes her husband’s dying after he decided to voluntarily stop eating and drinking:

Not Starting, or Stopping Treatment

For some terminally ill people, aggressive medical treatment may not be helpful and may prolong the dying process without improving quality of life. Under certain circumstances, treatments can increase suffering, ruin the remaining quality of life, or even shorten life.

Stopping treatment can result in a peaceful death but it may also result in increased discomfort. Consult with your physician and arrange for optimal palliative (comfort) care before stopping treatment.

Stopping treatment can be combined with hospice and palliative care or voluntary stopping eating and drinking to shorten the dying process and reduce suffering.

Palliative Sedation

For dying people experiencing so much pain or unmanageable symptoms that they cannot get relief from medications unless the dose is high enough to make them unconscious, palliative sedation provides enough medication to keep them continuously unconscious and thereby free of pain and symptoms. All nutrition and hydration is stopped, and they usually die within a few days.

People using palliative sedation should be monitored around the clock to be sure the sedation is adequate. While this intensive monitoring can sometimes be provided in the home, it is usually provided in a skilled nursing or inpatient hospice facility.

Many [people] claim that palliative sedation effectively eases the suffering of patients when other means fail to do so. However, it is an unacceptable option for most terminally ill adults whose primary concerns are losing autonomy, quality of life and their dignity.

—ANN JACKSON

While palliative sedation is an ethical and legal end-of-life option, it is not necessarily a right. While you can request palliative sedation, it is up to the medical provider to determine if it is appropriate. Some physicians and hospices are reluctant or unwilling to authorize palliative sedation. If having the option of palliative sedation is important to you, discuss it with your hospice or other medical provider well before it becomes necessary.

Complete Article HERE!