Category: Philosophy of Dying

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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!

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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]

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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.

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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.

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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.

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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.

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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.

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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.

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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!

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How to Die Peacefully, Part 2 Making Arrangements

Look for Part 1 of this series HERE!

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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.

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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]

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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.

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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]

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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!

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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.

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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]

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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.

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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.

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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.

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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.

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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!

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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.

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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.
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.
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.
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.
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.
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!

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Other Options to Hasten Your Death

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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.

  1. 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.
  2. 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.
  3. 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.
  4. Finalize your business and financial affairs, make funeral and memorial plans, and gather your family members to share memories and say your good-byes.
  5. 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.
  6. 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.
  7. 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!

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How to prepare for a good death

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Wise words and solid advice from BJ Miller, who thinks deeply about the end of life as head of the Zen Hospice Project.

Death is an uncomfortable topic. Although we’re well-acquainted with platitudes that remind us to seize the moment and live each day like it’s our last, few of us devote real time to envisioning the end of our lives — or the lives of those we love. In contrast, this is a focal point for BJ Miller, palliative care physician and executive director of the Zen Hospice Project, a San Francisco-based nonprofit that’s focused on improving our experience of death. His TED Talk, What really matters at the end of life, prompted such an outpouring of response that we hosted a Q&A on Facebook to hold a larger conversation about end-of-life care, dying with dignity and providing support for patients and families. Here are just some of the questions — and Miller’s answers.

Based on your experiences, what do you find that most people really want at the end of life? – Emilie S.
In general, people yearn for comfort, for their loved ones to be well cared for, to be unburdened and unburdening, to find some sense of closure and peace. But those are generalities and I would encourage all of us to remember that dying people are living and to treat them accordingly. There is so much room for personal preference.

What are good ways to talk to kids about death? – Michelle Q.
It’s important to remember that kids are not just miniature adults. This big topic, like others, needs to be couched in their developmental stage. In general, it’s helpful to avoid euphemisms or overly indirect language. Kids are generally much straighter shooters than we adults. There is a field called Child Life Services that has a lot to say about this subject and can be a great resource.

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People often say they don’t like hospitals; that mental block keeps them from spending time with someone they care about at the moment they need it most. What advice do you have for people who have a loved one in a hospital? How can each of us make that space kinder and better for the senses? – Kate T.
Little things go a long way. Bringing in photographs, familiar objects, flowers are, in my book, always wonderful. Of course, you can always bring in fresh baked cookies — even if your loved one can’t eat, engaging the senses can be potent. Those are some ideas around the external space. Of course, it’s always helpful to cultivate internal spaciousness by being a source of calm.

Death is a hard subject to talk about. How do we talk about this with our families so we can plan? – Danny K.
Several US-based organizations come to mind, including the Conversation Project and the Coalition for Compassionate Care of California. Another tool that people seem to love is the card game, My Gift of Grace. At Zen Hospice Project we also proudly host “death cafes” as a social engagement, and also offer a mindful caregiving program for anyone involved in facing the challenge at end of life or anyone interested in exploring more about this topic.

How does a non-clinical person learn how to care for others at the end of life? It seems like many of us will be in that position. – Don D.
This is exactly why we created the Mindful Caregiving education program at Zen Hospice Project. Estimates are that nearly one third of American adults will either need to receive or provide care to a loved one. We realize there are very few resources to support family caregivers and “informal caregivers” and that the work can be grueling. Zen Hospice Project’s educational curriculum is uniquely designed to enhance and support the wellbeing of both the patient and the caregiver. The program’s balance of social, medical and spiritual practices enables formal and informal caregivers, doctors, nurses and administrators to experience compassion and resiliency at the bedside while reducing burnout and enhancing care.

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Do you have any advice for caregivers about how they can take care of their own mental health? – Ella C.
We know from studies what works. There are two major themes for self care: one is some reflective practice, whether yoga or meditation or walking in the woods; the other is some sharing, talking, processing with people you know and trust. Especially with people who do similar work. Beyond those two major points, I would add to be good to yourself and don’t lose yourself in the role.

What do you think about end of life dialogue being considered as aphysician-reimbursed service in the United States? Given your experience, what do you think are the most important pieces of the conversation? How could physicians be better equipped to have this conversation? How could mindfulness training inform this service? – Liz M.
I’m very excited about this new legislation, both practically and symbolically. The key points are to have an open and ongoing conversation with your physician as well as your family or proxies. In fact, I think the single most important thing you can do is to name your proxy, because the situation needs to be read in real time. Remember this is not a single conversation but one that requires updates over time. Training clinicians to have this conversation is another matter and requires time: I recommend reading Atul Gawande’s book, Being Mortal, as a great resource. Insofar as mindfulness allows us to be more present in difficult situations, it can help set the stage for a more fruitful conversation.

Do palliative health centres offer psychological or other support for families after a loved one has passed? – Kasia S.
All certified hospice agencies are required to offer bereavement services to their communities. Admittedly, these services are poorly funded and generally underdeveloped. There is so much more work to be done helping families process what’s just happened and also to protect the new tenderness they may feel as they head back into the world. On an individual basis, many psychotherapists specialize in grief counseling and can be wonderful resources. On our way to developing more formal programs, we happily receive family members long after the death of their loved ones to revisit the house and the Zen Hospice community.

Can you offer resources for education material, guides for conversations and so on in languages other than English? – Julien G.
A great place to start would be to reach out to your local hospice or palliative care organization. You may also check with the National Hospice and Palliative Care Organization, the Center to Advance Palliative Care or the American Academy of Hospice and Palliative Medicine. You are pointing to a real need for cross-cultural understanding on the subject.

 Complete Article HERE!

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The Violet Hour: Great Writers at the End by Katie Roiphe review – how to cope with death

This study of Susan Sontag, Sigmund Freud, John Updike, and how they coped with the mystery of extinction, is also a memoir about brushes with mortality

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Katie Roiphe: ‘I think if I can capture death on the page, I’ll repair or heal something. I’ll feel better.’

Katie Roiphe begins her study of writers in their last hours with the story of a near-death experience: her own. At the age of 12 she began coughing up blood, but decided not to tell anyone – not her parents, or sisters, or doctor. She had in fact developed acute pneumonia, and after an operation that removed half of a lung she came out of hospital weighing 60lb, “too weak to open a door”. Ever since that narrow escape, death became her obsession, but one that continued to defy understanding or articulation. Who could make sense of such a thing? Her answer: great writers, specifically great writers as they approached death’s door. “I think if I can capture death on the page, I’ll repair or heal something. I’ll feel better. It comes down to that.” This mini-memoir, and a coda, are the most compelling parts of The Violet Hour. They bookend a sequence of five case studies of writers whose thoughts on mortality are often arresting, sometimes moving, yet never add up to a coherent vision of what Henry James called “the distinguished thing”.

Roiphe (above), an essayist, teacher and contrarian, is a woman up for a challenge. Her most recent books – a study of literary unions, Uncommon Arrangements, andIn Praise of Messy Lives, a scattershot broadside against the way we live now – reveal her tough, unbiddable, non-ingratiating character. Fittingly, her first subject is Susan Sontag, a writer whose personal and intellectual fierceness could be Roiphe’s model. Sontag’s determination to outface death became part of her legend. She had already survived cancer, twice, when she was diagnosed with leukaemia in 2004. Believing herself to be “exceptional”, she rejected the evidence, adopting a get-well-or-die-trying attitude that caused intense anguish among the people who cared for her – her son David, friends, nurses, hired hands. She took up cudgels once again, enduring chemo and the dangerous procedure of a bone marrow transplant. The treatment caused her shocking physical agony. At this point I couldn’t help thinking of Woody Allen’s line: “I don’t want to achieve immortality through my work. I want to achieve it through not dying.”

Susan Sontag with her son. David, in 1967.
Susan Sontag with her son. David, in 1967.

Sontag is an extreme case – and the only woman – in this book. Her example is unlikely to make Roiphe, or anyone, “feel better” about death. Sigmund Freud, on the other hand, adopted the opposite approach. Even as a young man he disliked the idea of “prolonging life at all costs”. Stricken by an inoperable cancer of the jaw, he refused any painkillers other than aspirin. “I prefer to think in torment than not to be able to think clearly,” he said. Was his stoicism a better, braver way to face the end? As Larkin wrote in “Aubade”, “Death is no different whined at than withstood”. His disciples believed that Freud had no terror of the end, but Roiphe wonders if he protested his indifference too much: he may have been trying to persuade himself that he didn’t care.

Shadowing Roiphe’s book is a tentative desire to find something consolatory – a truth, a meaning – in death. Can writers teach us how to die? The uncertain, provisional nature of her project is evident. Instead of a continuous narrative, she writes in discrete floating paragraphs, as if conducting a philosophical investigation. Either that, or she doesn’t quite know how to structure her argument. Maurice Sendak, a writer and illustrator she has revered from childhood, described death “as if it is a friend who is waiting for him”. He suffered a heart attack at 39, but lived on till his 80s. He owned Keats’s original death mask and would take it out “to stroke the smooth white forehead”. When his lover died, Sendak drew his corpse, obeying the creative instinct “to turn something terrible into art”. Here Roiphe does get at something useful, which is the consolation of work: “For the time it takes to draw what is in front of you, you are not helpless or a bystander or bereft: You are doing your job.” (I would take “or bereft” out of that sentence.)

John Updike, characteristically, worked unto the last, writing some of his most poignant poems (in Endpoint) from his hospital bed. Like Freud, he cleaved to stoicism in considering death, but unlike him had sought comfort in religious faith and sexual adventure, the latter his way – or at least his characters’ way – of cheating mortality: “If you have a secret, submerged, second life, you have somehow transcended or outwitted the confines of a single life.” In an almost too-perfect illustration of his twin drives we learn that Updike plotted Couples, his great novel of adultery, while in church – “little shivers and urgencies I would jot down on the program”. The oddness of this chapter, however, concerns what happened between Updike’s family during his last illness. His first wife Mary and their four grown-up children seem to have come a cropper under the Cerberus-like vigilance of his second wife Martha. The children felt that Martha, perhaps with her husband’s tacit agreement, restricted their “alone-time” with Updike. This is interesting as gossip, but I can’t see how it enlarges our understanding of the writer or his work.

Dylan Thomas in 1946.
Dylan Thomas in 1946.

Even less illuminating is the record of Dylan Thomas’s bibulous last days in New York, swaggering – or staggering – from hotel to pub to hospital and thence into a coma. Roiphe notes that myths have clustered around his death, and the causes of it. Some still argue that he “wasn’t an alcoholic”. Seriously? Put it this way: if Dylan Thomas was not an alcoholic then his was an even more horrifying personality than at first appears. Addiction would at least explain, if not excuse, his lechery, his flakiness, his self-pity, his self-loathing, his tendency to steal from his friends, and the fact that he had written only six poems in his last six years. At 39, Thomas is the youngest to go of this small assembly and the one whose death I felt least inclined to lament.

The Violet Hour does, however, rally at the end. For reasons the author doesn’t entirely understand she seeks an interview with James Salter, then 89 years old, and nearly the last Great American Novelist. To her surprise he agrees to talk. Perhaps it is her contact with a living subject, perhaps it is Salter’s wry, Delphic way with words, or the fact that he came close to death as a fighter pilot in Korea, but something is unlocked by their encounter and Roiphe at last identifies what her quest has been about – not death but the fear of death: “The knowing you are about to die. The panic of its approach … That’s what I’ve been trying to write my way through.” It returns her to another formative moment in her life, the sudden collapse of her father – a heart attack in the lobby of his building – and her belated realisation that he must have felt pain in the minutes before he died. She is excruciated by the idea of his pain, and that he may have panicked. “The idea that he didn’t have time to be afraid had consoled me.”

This book is Roiphe’s haunting but muddled attempt to come to terms with the mystery of extinction. Her father died, and she will never know what he was going through. Salter, who died last year, knew best: “Don’t dwell on it.”

Complete Article HERE!