6 Things to Do for a Family After the Loss of a Baby

Most of all, be proactively there and present for your friend.


Watching a friend or loved one go through the heartache of losing a child can be a horribly painful thing to do. If you yourself have experienced such a thing, then the pain is acutely familiar to you; but if you haven’t, you may not have the first clue about what to do or say. Below are six things to you can do to show that you’re there and that you care.

1. Be proactive.

If a friend or a loved one has just lost a child, you may be inclined to reach out and say to them something like, “Please let me know if there’s anything at all I can do to help,” or perhaps, “Don’t hesitate to reach out if you need anything from me.” But how often do people in need readily and comfortably reach out? If you’re sincere in your offer to help, be proactive and offer it outright instead of waiting to be asked. Rather than sitting around and expecting the family to come to you in their time of grief, put a life preserver right within their reach, and place your hand directly in theirs.

2. Feed them.

One of the last things a grieving family wants to think about after the loss of a child is meal-planning, cooking, and cleaning up — especially if they have children in the house who don’t understand the level of grief they’re experiencing. If you have the capacity to make a home-cooked meal, to bring takeout, or even to just provide them with a gift card to their favorite restaurant, then do it at the first opportunity you have. They’ll be so grateful for the thought, for the meal and for the provision you gave them.

3. Hope for the best, but assume the worst.

Maybe you yourself have experienced the loss of a baby, or maybe you haven’t — but an important thing to remember is that grief is not linear, and the course it takes through each grieving parent is deeply personal and unpredictable all the same. Time will pass, and you will find yourself as an outlet of support hopeful that the wound is healing — but do not assume that it has just yet. Triggers abound, and the loss of a baby will be with its mother for the rest of her life; so try your utmost to allow her an abundance of safe space to grieve, no matter how much time has passed or the extent to which you figure she should have moved on by now.

4. Commiserate and empathize.

The last thing a person wants to hear after the loss of their child is that it was for the best, that it was meant to be, or that it all happened this way for a reason. Put yourself in a grieving family’s shoes and remember that platitudes and placations have no place. Instead, do everything you can to empathize, to console and to be a haven where sadness, anger and hopelessness can abound freely and without reservation. Be an outlet for that grieving mother to process everything she’s feeling — whether she chooses to lament outwardly, to curse the ground she walks on, or to retreat deep within herself for an extended period of time. Allow her grief take its course.

5. Show grace.

Don’t be offended if she doesn’t readily interact with you, return your calls or much acknowledge you at all. This isn’t personal, nor is it the time to analyze the health or status of your relationship. People grieve in different ways, and it’s important to show all the grace you can while you watch from the outside as a family processes the loss of their child.

6. Send a text.

If you’re up to your eyeballs at home, if you’re living a thousand miles away, or if you just don’t otherwise have it in you to be on the front lines, do what you can to remind your friend that you’re there, that you love her and that you’re thinking of her. Whether or not she replies right away doesn’t matter; she’ll be endlessly grateful to know that she’s on your mind, because the silence from the people she thought would be there for her can be otherwise deafening.

Complete Article HERE!

How to die well

Lack of faith is no impediment to a decent death – or to helping another through theirs

Stand by me: Shailene Woodley and Ansel Elgort as cancer patients who fall in love, in The Fault In Our Stars.

By Johannes Klabbers

In the secular age you don’t need special authorisation to console a dying person. Just learning what it means to be there for someone is enough.

Death literacy” is officially a thing. People go to death cafés; books about death are in demand… and around 55 million people worldwide do it every year. But how do you actually do dying well? And who can dying people turn to for support?

Although I know exceptional doctors and nurses who can and do talk with patients about their looming demise, it is something that many don’t feel qualified to do.

Traditionally, expertise in dying was thought to be the remit of religion. The Catholic church recently revived their medieval handbook for dying people, Ars Moriendi, now illustrated with drawings of happy families rather than demons, like the original, and handily available in the form of a website: artofdyingwell.org.

But what are the options for atheists or agnostics today? When it comes to thinking about what it means to be mortal, many people find themselves in a kind of secular vacuum. But living a life without religion doesn’t mean that you have to be alone at the end.

As a secular pastoral carer, I learned that consoling a seriously ill and dying person is something that almost anyone can do, whatever their faith – or lack thereof. You don’t need a special qualification, or a badge, or permission from an authority figure, supernatural or otherwise, just your humanity and determination – and for the suffering person to want someone to be there with them.

The first crucial step is turning up. Too often, our anxiety about saying or doing the “wrong thing” leads us to decide not to visit someone. Offering to be there for someone, even if they decline – and they might – is never wrong. Being there for someone means giving your attention to the person not to their illness, and concentrating on listening, not on worrying about what to say.

You will need to accept that the dying person may not want to discuss their sadness and fears – at least at first. They may want to talk about the football or the latest episode of Bake Off. Or they may just need someone to sit with them in silence.

Remember that it is not unreasonable to feel awkward. You might feel uneasy in the setting, or be distressed by their appearance. But your job is to accept your discomfort and think beyond it. You can show sadness, but do not burden them with your grief. You may need to be supported and comforted yourself afterwards.

While there might not be any formal qualifications in death literacy with which you can arm yourself, there are a number of wonderful, entirely secular, books by brilliant writers who are in the process of dying or supporting dying people, from Jenny Diski’s In Gratitude (to Tom Lubbock) and Marion Coutt’s memoirs, which together form an awe-inspiring document of courage, humility and humanity.

There is a moment which perfectly illustrates how to console a dying person in the Dutch author Connie Palmen’s moving memoir Logbook, when her husband, a leading Dutch politician, lies dying. In a moment of lucidity he sits upright and exclaims, “I am sorry for my sins!”

“I absolve you,” Connie tells him.

Ultimately, our humanity is all the authority we need to offer consolation to dying people.

Complete Article HERE!

How to Help an Elderly Parent Deal With the Death of a Spouse


By Michael Lewis

[V]elta Lewis died the morning of May 15th in the arms of her husband in the home they had purchased upon retiring three years previously. Her death, nine months after the diagnosis of lung cancer, occurred shortly before the couple expected to celebrate their 52nd wedding anniversary during a two-week trip to Paris. My father was devastated. Over the following weeks, I would find him sitting alone in their darkened family room – no television, no radio, no conversation to break the silence – staring with red-rimmed eyes into the past, trails of tears upon his cheeks.

If you have experienced the death of a loved one, you understand how grief can stun, even take you to your knees. In the midst of your own pain, it is easy to forget others who suffer. However, in the case of a parent whose spouse has died, it is at this time that your strength and compassion is most needed.

Dealing With the Death of a Spouse

Members of the Greatest Generation were no strangers to death. My dad had experienced the passing of his grandmother as a young boy, and witnessed her body resting in the parlor of their house for final viewing, as was the custom in those days. He had spent almost a year in Europe during World War II, losing buddies to the ravages of battle. In the ensuing years, he and my mother buried parents, relatives, and friends, the funerals becoming more frequent as they grew older. They were religious people, neither fearing death, sure of their place in eternity.

But generally, the natural order of life is for husbands to go first, not wives. They had worked and saved over the years, expecting to enjoy 5 to 10 years of travel and seeing grandchildren before Dad’s time to go. Mother dying first was unnatural in the grand scheme of things – unlikely, but not impossible. In fact, according to the U.S. Census figures in 2012, husbands are 3.2 times more likely to die before their wives, with 36.9% of women older than 65 widowed compared to 11.5% of men over age 65 who are widowers. To my father, all of their shared preparations for their final days were suddenly pointless.

Even when husbands die first, the toll on the surviving wife can be equally overwhelming, particularly if the death is unexpected. The survivor loses not only a mate, but a long-term partner, an everyday companion, and, commonly, a caregiver. Grief and sorrow as well as guilt for being a survivor are common feelings and take time to reconcile. Many survivors report a deep sense of loneliness and isolation that can take months, even years to overcome; the closer the marital relationship, the more depressed the surviving partner is likely to be.

Their grief can sometimes have fatal consequences if untreated. A 2013 study by the Harvard School of Public Health found that a surviving spouse over the age of 50 has a 66% increased risk of dying within the first three months of the spouse’s death. Physicians often refer to the “broken heart syndrome,” or stress cardiomyopathy, the result of a sudden stress like the unexpected death of a loved one.

If the couple is ill or frail, the consequences of the death of one of the partners is particularly distressing for the survivor. Together, they can live independently by relying on each other. When one dies, the other may not be capable of living alone, and must cope with the loss of their spouse and, possibly, their independence.

Ironically, surviving spouses who are better off economically are likely to be more depressed. According to Rutgers Professor and sociologist Deborah Carr, “Those who own a home may do worse because they have the added strain of caring for a house. They may be more socially isolated, lonely, and even afraid of living in a home alone, compared to surviving spouses who live in apartments and have neighbors close by.”

Since many elderly couples divide the tasks of everyday living – for instance, one may cook meals and mow the lawn, while the other pays bills and handles home repairs –  the loss of one of the partners may leave the other unequipped or unable to add the new tasks necessary for everyday existence. For instance, Jackie Buttimer of Bethesda, Maryland had never balanced a checkbook and rarely used a computer before her husband of nearly 50 years died in April 2010. “It’s a huge learning curve, and I had never lived alone,” says Buttimer.

The Role of Children and Friends

Losing a partner affects older adults in multiple ways: Some may continue to function without appearing to be excessively affected, while others are incapable of completing the smallest task. At the same time, you will be grieving for the loss of a mother or father and perhaps recognizing your own mortality. It is important to handle your own grief and fears, but remember that losing a mate is not the same as losing a parent. If possible, your priority should be to comfort your parent first, recognizing that, at times, you may need to withdraw to grieve and recharge.

Do not be reluctant to ask for help from other family members or friends. Many people are willing to help, but hesitate to intrude during this very emotional time. They need your guidance to help in ways that are beneficial, whether it is providing meals, performing needed household duties such as washing clothes or mowing the lawn, or spending time with your parent in conversation and consolation.

There is no definite mourning period or average time to return to “normal.” People do not easily get over their pain; they eventually learn to cope with it as time softens the loss. Some parents may want to talk about the deceased, while others avoid the subject, especially if the death was painful or unexpected. Take your cues from your parent.

Shortly after my mother’s death, my father and I took a week-long automobile trip to visit the locations of his childhood, the hours in the car filled with his recollection of the memories of their life together. We laughed, we cried, and we both felt better. Remember that grief will usually resurface in the years ahead at holidays, birthdays, anniversaries, and any special family days. If and when emotions resurface, it is important to acknowledge and share the feelings.

The Immediate Aftermath of Death

Even with well-planned, predetermined arrangements, there are a number of responsibilities that require attention following a death. The surviving mate may be overcome with grief so these duties must be completed by a child or another representative of the family. They include:

  • Notification of the Proper Authorities. If the death occurs at home, as in my mother’s case, a hospice representative and a physician are required to pronounce death and dispose of any restricted pharmaceutical drugs remaining unused. If the death was unexpected, a coroner or medical examiner may be required at the scene. The medical personnel typically make arrangements to transfer the deceased to the mortuary of choice.
  • Making or Reviewing Funeral Arrangements. In many cases, arrangements have been made concerning the disposition of the body (burial or cremation), burial sites, and funeral services. The arrangements need review, and occasionally change to accommodate the last wishes of the deceased or surviving spouse. This is a particularly emotional time which some unscrupulous funeral directors may attempt to exploit by up-selling to more expensive caskets, extensive flower arrangements, or elaborate tombstones. The best counsel is to follow the wishes of the deceased as close as possible, assuming the arrangements were made under less emotional circumstances.
  • Contacting Family, Friends, and Clergy. Family members, often spread across the continent, need to be contacted and informed of funeral arrangements, with time between the death and service for those to travel if necessary. Close friends should be contacted personally with the request that they contact others who might wish to pay their respects. Churches often respond immediately when noticed of a member’s death with offers of meals and other help.
  • Notifying Legal, Financial, and Government Authorities. While these duties can be delayed until after the funeral and receipt of death certificates, the Social Security Administration should be notified so that monthly benefits can cease and survivor’s benefits can be initiated, if available. Life insurance claims should be filed. Institutions which provide jointly-owned bank accounts, credit cards, or other property need to be notified and provided with proper documentation to transfer ownership as dictated by the will of the deceased. If an attorney has not been previously involved in estate planning, seeking counsel to proceed most efficiently to probate any will and settle the estate may be wise.
  • Delaying Payment of Medical Bills for the Deceased. In the weeks following my mother’s death, my dad was deluged with medical bills relating to my mother’s care and death, even though the costs had been incurred in her name and covered by Medicare. Information systems in the medical industry are notably inefficient, outdated, and inaccurate. As a consequence, many providers continue to bill my deceased mother, even though accounts had been previously paid or were not legally due. My father, wishing to honor my mother’s good name, would pay the accounts, being unable to determine whether the balance was legitimate or not. In the event of a death, it is wise to delay any medical payments for the deceased for a minimum of three months so that billings and collections can be properly recorded and amounts owed properly reconciled.

Depending upon the planning preceding the death, the ability of the survivor to handle legal and financial matters, and the complexity of the estate, there will almost certainly be additional cases where the help or guidance of a child to protect the interests of the surviving parent will be necessary.

Signs of Continuing Grief in the Elderly

Many people appear to quickly bounce back after a tragic event, but appearances can be deceiving. According to the American Hospice Foundation, some signs that your parent is still grieving include the following:

  • Forgetfulness. Missing appointments, locking keys in the car, or mailing unsigned checks with bills are all signs that your surviving parent may have difficulty focusing. Be patient and suggest written reminders to stay focused.
  • Disorganization. Taking longer or failing to complete one task before beginning another is often seen in grieving adults. Written schedules can help.
  • Inability to Concentrate. Grief causes the mind to wander, so reading a book or watching a television show can be difficult. Be especially alert if your parent continues to drive an automobile or operate dangerous machinery.
  • Lack of Interest or Motivation. Your parent may question the purpose of life or why any effort is worth doing. Listen to them, express love and support, and keep trying to get them involved in something beyond their immediate environment.
  • Fascination With Death or the Hereafter. While it’s natural to think about it following a death, a fixation on death combined with depression can lead to suicide. Involve a therapist immediately.

Specific Problems That May Arise

While most people gradually recover from the death of a long-term spouse, there are unique problems and circumstances that can complicate or extend the healing process. As their child, you should be cognizant of the potential areas which can cause obstacles and seek to minimize them.

1. Loss of Independence

The death of a spouse emphasizes the physical fragility of the survivor. As people grow older, muscle strength declines, and problems with balance and gait appear. Neurological conditions such as Parkinson’s, high blood pressure, neuropathy, and vision problems such as glaucoma and cataracts can cause unsteadiness and falls, and may require certain medications. A pair of people living together can look after one another and call for help when necessary – but a person living alone lacks that security.

If your elderly parent wants to live alone but may be subject to falls, consider improving the physical environment of the home by removing loose rugs, installing railings on stairs, adding ramps, and putting grab bars in the bathrooms. Adding a home monitoring system may give you and your elderly parent peace of mind.

2. New Tasks to Learn

During the 50-plus years he was married, my father rarely wrote a check, paid a bill, or determined which investments were made in the family’s retirement accounts. In other families, the wife may have let her husband take care of all financial matters. Some surviving partners do not know how to cook or to drive a car.

When a spouse dies, the survivor is required to assume new responsibilities, which can be overwhelming. Fortunately, technology has become increasingly simple, so that even the most unfamiliar can learn basic tasks necessary to everyday life. Encourage your parent to sign up for community courses for the elderly in local colleges, universities, local chapters of the American Association for Retired Persons (AARP), or senior centers. They may find friends with common interests and learn new skills that will allow them to connect with a broader world.

3. Financial Complications

Problems with the level or management of assets can arise after the death of a spouse. For example, a husband and wife typically draw two Social Security checks each month. With the death of one spouse, income is reduced. Annuity or retirement plan distributions may also be changed. In many cases, the deceased spouse may have been responsible for making day-to-day management decisions in the family retirement portfolio, expertise that is no longer available with the passing of the partner.

Depending upon the will and wishes of the dying spouse, control of the assets may rest solely with the survivor, potentially complicating efforts to protect their financial interests. Unfortunately, surviving elderly spouses are popular targets for con-men, crooks, and unscrupulous investment salesmen. If you have suspicions that your parent is unable to rationally make investment decisions or under the influence of those who do not have his or her best interests in mind, seek legal help immediately.

4. Loneliness and Depression

Intermittent periods of depression and loneliness invariably accompany the death of spouse. In fact, healthy grieving is a process that can last for months or years. However, as time goes by, the periods of loneliness and depressions usually become shorter while the periods between depressions extend. In some cases, however, months can go by without any sign of improvement. Mental professionals call this condition “complicated grieving.”

Signs of complicated grief include the following:

  • An inability to accept that death has occurred
  • Frequent nightmares and intrusive memories
  • Withdrawal from social contact
  • Constant yearning for the deceased

Grief has physical consequences – loss of appetite, trouble sleeping, headache, fatigue, muscle tension – which generally result in decreased exercise, deficient diet, and an over-reliance on medication. If your parent seems to be stuck in a continuing cycle of depression, seek psychological help and encourage them to talk to friends or a spiritual advisor.

Remember to Take Care of Yourself

Trying to help your parent recover from death-related grief is akin to rescuing someone from drowning. You may be struggling with your own depression and feelings of guilt and regret. If you find that you cannot help your father or mother without sacrificing yourself in the process, ask for help from other family members, a friend, or a mental health professional.

Take time for yourself and your immediate family and seek a support group if necessary. Be sure you maintain a good diet, keep exercising, and get plenty of sleep. And focus on the good memories of the parent who is gone as well as the one who survives. Remember that time will eventually lessen your pain.

Final Word

My father eventually followed my mother in death. He was unafraid, even excited, since he believed that his wife was waiting on the other side, and the two would spend the rest of eternity together.

While helping my dad through his grief at my mother’s passing was at times inconvenient and frustrating, I have no doubt that our relationship deepened and strengthened as a result. If the occasion arises where you are called to help one of your parents after the death of your other parent, welcome the opportunity to share your grief and express your love. Like births, death can show us the joy of life and family.

What other tips can you suggest to help a parent deal with the death of a spouse?

Complete Article HERE!

Death With Dignity

Longtime lobbyist John Radcliffe, 74, terminally ill with stage-four cancer, is working to change Hawaii’s laws that prohibit access to life-ending medication when suffering becomes unbearable

By Susan Kang Sunderland

[P]utting one’s life on the line for a cause is nothing new to lobbyist John Radcliffe. The deft negotiator made a career of it. But now he literally is doing so to awaken our community to an issue.

If he and supporters are successful, Hawaii will be among seven states to legalize medical aid in dying.

Radcliffe, 74, who is terminally ill with stage-four cancer, has been in the news a lot lately to express his wish to have access to life-ending medication should his suffering become unbearable. But currently in Hawaii that is a crime.

Through legislative and legal action, Radcliffe hopes to empower individuals to make life-ending decisions that do not subject doctors to prosecution in order to assist patients in that process.

Radcliffe’s family is in full support of his wish, but unless things change, this will not be among the options available to him when he suffers prolonged, debilitating pain.

Words matter in discussing this sensitive issue. So Radcliffe is quick to set parameters on what he is — and isn’t — talking about.

John Radcliffe says if the legal system is a barrier to quality of life, you change the law

“Aid in dying is a medical practice to treat adults who are terminally ill with six months or less to live,” Radcliffe explains. “They must be mentally capable of making their own decision to request a prescription for life-ending medication from their physician, which would be self-administered.”

Aid in dying, he emphasizes, is not assisted suicide or euthanasia.

“To a terminally ill person, the term ‘assisted suicide’ is offensive and hurtful,” the Makiki resident says. “I want to live, but my condition is incurable. There is no hope for a better outcome.

“Suicide is secretive and often impulsive, without involvement of family, friends or health care professionals,” he adds.

Medical aid in dying also is known as death with dignity.

“The issue is really about dignity, pain and unnecessary suffering,” Radcliffe says. “I come from the position that you should do as much as you can as well as you can for other people for as long as you can.

“I am in a unique situation to do that,” asserts the government relations expert.

Radcliffe was diagnosed with incurable colon cancer in 2014 that has metastasized to his liver. He’s been hospitalized three times, been in the emergency room 15 times and has had 42 chemotherapy treatments.

He took his 43rd chemo treatment Wednesday, Jan. 18, while seated next to state Sen. Rosalind Baker at the opening of the state Legislature.

That’s a bit dramatic, we say about his unorthodox tactic of persuasion.

“Nah,” Radcliffe says with a laugh. “No one even noticed. That’s why I have to make a point of it. When you talk to legislators about cancer, it tends to be theoretical. Well, this isn’t theoretical to me. This is real.”

As a union organizer and lobbyist for four decades, including 13 years as executive director of the Hawaii State Teachers Association, Radcliffe knows that addressing social problems with lawmakers is not easy.

His credibility is at stake. “The legislators know me,” says the co-founder and president emeritus of Capitol Consultants of Hawaii. “They trust me. They know I won’t lie to them or give them bad information.

“But I can’t imagine that with 80 percent of voters being in support that they would be opposed,” Radcliffe suggests.

A poll conducted last November by Anthology Research shows 80 percent of Hawaii voters across all demographics believe a medical aid in dying option should be legal. Strong support (55 percent) outweighs strong opposition (8 percent) by an almost seven-to-one margin, while 12 percent oppose the option.

“This is about the ability to have a choice when you’re suffering,” Radcliffe states. “It’s comforting to some people to know they have a choice, as it is to me.

“I want to be in control of my life, as I’ve always been. It’s about quality of life. If the legal system is a barrier, ‘you change the law.’”

That’s the second strategy he and the advocacy organization Compassion & Choice Hawaii will mount after years of failing to get legislation passed.

Radcliffe, retired oncologist Dr. Chuck Miller, and Compassion & Choices Hawaii are plaintiffs in a lawsuit against the state of Hawaii asserting that the Hawaii Constitution and existing state law allow the practice of medical aid in dying.

“Mr. Radcliffe can’t wait and see whether the courts or the Legislature will ultimately solve this question, but our hope is that this option will be made available to him as soon as possible. By filing litigation now, we have put the process in motion on all fronts,” says Mary Steiner, Compassion & Choices Hawaii campaign manager.

Aid in dying currently is permitted legally in Oregon, Washington, Montana, Vermont, California and Colorado.

In Hawaii, a Governor’s Blue Ribbon panel on living and dying with dignity in 1998 recommended changing existing laws, rules and practices to give wider choices in end-of-life decisions, including physician-assisted death.

End-of-life options include declining treatment or avoiding unwanted medical treatment, palliative care (pain management) or VSED (voluntarily stopping eating and drinking).

Radcliffe’s is not the only story of a terminally ill person seeking end-of-life options. There are many stories of patients, families and friends who know the plight of long-suffering individuals.

There are heart-wrenching accounts of bewildered care-givers who experience the helplessness and difficulty of aiding agonized loved ones. They suffer in silence.

But proponents of legislation urge citizens to let their voices be heard, whether it’s by letters to legislators, testimonies to help educate the community, or joining forces to add representation to the cause.

“If this means anything to people, they must show up,” Radcliffe urges. “This is the year that this must happen.

“It’s too late for me. But it doesn’t have to be for others,” he implores.

Opponents cite spiritual, moral and modern medical advances to counter the need for more options. In fact, emotions run high when the dialogue is about death — the D word.

“Local people no like talk about dis kine stuff,” Radcliffe says.

Actually, all people don’t enjoy bringing up the subject. Talking about death is a social taboo. It’s just not done

in polite society. But with Hawaii’s aging population, it is an essential and timely topic for private and public discourse.

In Oregon, for instance, end-of-life care reportedly is improved since the law’s implementation in 1997. It is said to be thanks in large part to the dialogue the law encourages between people and their doctors.

Hospice use is high and referrals are up, as is other use of palliative care.

But what of the man to whom we address this living eulogy?

“I want to be remembered as a good, loyal friend and a decent human being,” he says.

“I hope this legislation passes without trouble,” he reflects, citing the move toward patient-directed care. “It would say something about us as a people. If we aren’t humane people, then who are we?”

As an inspired philanthropist once said, “There’s a lot of difference between human being and being human.”

Many will remember the contributions John Radcliffe has made to this community. He has spent his life fighting for causes. This will be his last and perhaps best fight.

As retired teacher Carol Sakamoto says in tribute, “Wish him well, and tell him that all the teachers will be praying for his success and thank him for his many years of service.”

That’s what living well and making a difference is all about.

Complete Article HERE!

How do you want to die? Write it down.

[M]ost Americans are unprepared for the worst to happen—an accident or an unexpected illness that leaves them brain dead, but still alive.  That’s what happened to Terri Schiavo, a young woman who became comatose after suffering a heart attack in 1990.  

Schiavo was kept alive by a feeding tube for fifteen years.  During that time, her husband tried to withdraw the feeding tube, but was adamantly opposed by Schiavo’s parents, Congress, and President George W. Bush.  After a highly publicized legal battle, the feeding tube was finally removed and Schiavo died two weeks later.  This protracted battle might have been avoided, if Terri Schiavo had completed a document known as an advance directive.  

Post-Terri Schiavo

81-year old Leah Brueggeman wants her intentions made clear, in the event she is unable to express her wishes for medical treatment.  She and her husband live in La Crosse, Wisconsin and they completed their six-page advance directives in 2009 with the help of an attorney.  “We don’t want to be put on feeding tubes indefinitely,” says Leah. “If there’s no chance of recovery—just let us go!”

The advance directive is a legal document that has two parts.  One specifies the kind of medical care a patient wants if he is no longer competent.  For example, CPR if his heart stops, feeding tubes if he can no longer eat on his own, IV fluids for hydration.  Or he can refuse any or all of these interventions.  The patient also designates someone trusted who can make medical decisions on his behalf if he is unable to.

The Schiavo case brought more public attention to the importance of having an advance directive.  But that interest quickly receded.  Today, only a third of all Americans have completed an advance directive. Dr. Ruma Kumar, a palliative care specialist and regional medical director with Kaiser Permanente of Northern California, says that many patients are too afraid to plan for their future health care and their doctors are often reluctant to bring up planning.  According to Kumar, doctors don’t have the time to engage their patients in extended end-of-life conversations.  “Or if you bring up planning, you might make the patient nervous that you’re giving up hope in their treatment plan,” she says.  

Limits of advance directives

But even if an advance directive is completed, a patient’s stated wishes may not always be carried out.  The document can get overlooked, misplaced, or ignored by medical staff, as Katy Butler found out.  “Hospitals are a world of their own,” says Butler. “It’s like a foreign subculture.  And once you enter into that system, it can be very, very difficult to get your wishes put into practice.”

Butler is a Bay Area journalist who wrote the best-selling memoir “Knocking on Heaven’s Door:  The Path to a Better Way of Death.”  In her book, Butler described her own difficult experiences, trying to get her father’s advance directive enforced.  She recalls going up against a wall of resistance when his physician refused her request to withdraw treatment for her dying father.  

Butler’s father was 79 when he suffered a major stroke in 2002, which caused brain damage and dementia. He had a weak heart and Butler says he probably would have died of natural causes within two years following the stroke.  But his pacemaker kept him alive for the next six years.  In her memoir, Butler says that the extra years of life caused him great misery.  “The tipping point had come,” she writes. “Death would have been a blessing and living was a curse.”

As her father’s designated medical agent, Butler went to his cardiologist and requested that the pacemaker be turned off.  “The doctor not only refused to cooperate—he really treated us as if we were some kind of moral monster,” Butler says. “Technically according to the law, you have the right to refuse any form of medical treatment and you have the right to request the withdrawal of any form of medical treatment.  But you’ve got an advanced device like a pacemaker—you don’t know how to turn it off.  You don’t know where to go to get someone to help you turn it off if your cardiologist is saying no.”

La Crosse, Wisconsin—the best place to die in America

One place Katy Butler might have gone for help was La Crosse, a small city on the Mississippi River in Wisconsin.  La Crosse is known for its steamboats, Wisconsin cheese, and its excellent end-of-life care.  La Crosse is the home of the Gundersen health system, ranked in the top one percent of hospitals nationwide. An astounding 96 percent of all La Crosse residents who died last year had completed advance directives. That figure far exceeds the number of people who complete advance directives in the Bay Area and the rest of the country.  

Dr. Bud Hammes, Gundersen medical ethicist

Dr. Bud Hammes, a medical ethicist at Gundersen, led the effort to improve end-of-life care in La Crosse. The key to success, says Hammes, was creating a supportive culture of person-centered care that honors a patient’s goals and values.  “It isn’t just about training a few people to have these conversations with patients,” Hammes says. “It’s actually about changing the culture of the health care system and ultimately of the community.”

To change the culture at Gundersen, Hammes convinced hospital administrators in the late 1980’s that end-of-life care needed to be given higher priority.  An electronic medical record system was created to document patient preferences.  That way, advance directives are easily accessible and can’t get lost.

End-of-life conversations and advance directives are now part of the hospital’s routine practice.  Michael Sigmund is a long-time La Crosse resident and patient at Gundersen.  He explains,“It’s the nurse who asks the question when you first walk in the door.  ‘How are you doing?  You have any pains today?  Do you have an advance directive?’”

Michael Sigmund (far left) at La Crosse Coffee Shop

Others come to Gundersen to complete their advance directives because of peer pressure from friends and family.  Karen (who did not want her last name used) sought out the assistance of Gundersen facilitator Janet Olmstead for help with her advance directive.  Karen put off this visit for many years, but finally overcame her hesitancy after speaking with a friend.  “I don’t want somebody else stuck with making decisions,” she says. “It’s a burden for them to make decisions that they don’t know what I want.  So I just thought, ‘now is the time.’”

Karen and Janet Oldstead, a Gundersen advance care planning facilitator

Karen says she doesn’t want heroic measures or life-prolonging treatments if she’s no longer functional. Like Karen, many of Gundersen’s patients want medical treatments stopped if there’s little or no hope of recovery.  Honoring patient preferences has resulted in fewer tests and expensive procedures.  “We are very successful in outcomes in decreasing the costs at the end of life in comparison to lots of other systems,” says Gundersen CEO Dr. Scott Rathgaber, “I can tell you that’s millions of dollars that are left on the table because of our commitment to the patients.”

The Gundersen program was so successful that Hammes took it city-wide.  In the early 1990’s, Gundersen partnered with the other three local hospitals and formed a coalition called “Respecting Choices”.  It brought churches, social service agencies, and nursing homes together and trained their staff to do community education and outreach.  This concerted 25-year campaign has done much to raise public awareness around end-of-life planning and advance directives.  

The La Crosse model comes to the Bay Area

Inspired by La Crosse’s success, Kaiser Permanente worked with Gundersen and started its own Life Care Planning program in 2012. Among its goals is to increase the number of patients completing advance directives.  Over 600 physicians, nurses, and social workers have now been trained as facilitators.  Kaiser palliative care specialist Ruma Kumar says much of what Kaiser did was modeled after the Gundersen program.  “We’re hoping to do the same thing over the next eight to 10 years,” she says. “To get greater than 90 percent of our patients with planning done.”

But replicating the Gundersen model throughout the entire Bay Area presents huge challenges.  Bringing together all the hospitals and the hundreds of churches, senior facilities, and social service agencies would be extremely difficult and expensive.  In addition, the Bay Area has a much larger, diverse population with multiple languages and cultures.  Without language-proficient facilitators, outreach to all sectors of the Bay Area would be nearly impossible.  

Educational outreach efforts largely depend on volunteers organizations like the East Bay Conversation Project, a community-wide coalition working to help people plan their preferences for care at the end of life.  At a recent gathering in Berkeley, Alison Rodman and two other volunteers talked to a group of seniors on how to complete an advance directive.  She tells them that forms are available on-line.  “It’s a pretty simple document that’s legal and you don’t have to go through great expense by using a lawyer or having it notarized,” Rodman explains.

Don’t wait until it’s too late

La Crosse resident Leah Brueggeman is glad her family didn’t wait.  “And of course, we don’t like to think of death and dying but—it happens,” she says.  Several years ago, Leah’s husband Jim made the decision to stop medical treatment for his ailing mother.  But following her death, Jim had second thoughts.  “I came home and my husband—he was just nearly sobbing.  He was just distraught,” Leah recalls, “He said ‘I killed my mother.’  He said ‘We stopped her medication.’  I said ‘That’s what she wanted.'”

Leah Brueggeman

Unbeknownst to Jim, his mother had filled out an advance directive.  Leah went to his mother’s assisted living facility and found a copy of it.  “We got it out.  Her wishes are right here:  no medication blah blah blah,” Leah says. “I took that home and said ‘Honey, take a look at this.  This is what your mother wanted. You’re not killing her.'”

Jim stopped agonizing over his mother’s death, now that he no longer had to guess at what she wanted. Thanks to her advance directive, Jim and Leah were able to avoid the guilt and conflict that had torn apart the family of Terry Schiavo over 20 years ago.  

Complete Article HERE!

Legalizing Aid In Dying Doesn’t Mean Patients Have Access To It

Dr. Lonny Shavelson heads Bay Area End of Life Options, a Berkeley, Calif., medical practice that offers advice and services to patients seeking aid in dying under the state law enacted last June.


By JoNel Aleccia

[I]n the seven months since California’s aid-in-dying law took effect, Dr. Lonny Shavelson has helped nearly two dozen terminally ill people end their lives with lethal drugs — but only, he says, because too few others would.

Shavelson, director of a Berkeley, Calif., consulting clinic, said he has heard from more than 200 patients, including dozens who were stunned to learn that local health care providers have refused to participate in the state’s End of Life Options Act.

“Those are the ones who could find me,” says Shavelson, who heads Bay Area End of Life Options and is a longtime advocate of assisted suicide. “Lack of access is much more profound than anyone is talking about.”

Across California, and in the five other states where medical aid-in-dying is now allowed, access is not guaranteed, advocates say. Hospitals, health systems and individual doctors are not obligated to prescribe or dispense drugs to induce death, and many choose not to.

Most of the resistance comes from faith-based systems. The Catholic Church has long opposed aid-in-dying laws as a violation of church directives for ethical care. But some secular hospitals and other providers also have declined.

In Colorado, where the nation’s latest aid-in-dying law took effect in December, health systems covering nearly third of hospitals in the state, plus scores of clinics, are refusing to participate, according to a recent STAT report.

Even in Oregon, which enacted the first Death with Dignity law in 1997, parts of the state have no providers within 100 miles willing or able to dispense the lethal drugs, say officials with Compassion & Choices, a nonprofit group that backs aid-in-dying laws.

“That’s why we still have active access campaigns in Oregon, even after 20 years,” says Matt Whitaker, the group’s state director for California and Oregon. “It becomes a challenge that causes us to have to remain extremely vigilant.”

In Washington state, where the practice was legalized in 2009, a Seattle hospice patient with advanced brain cancer was denied access to willing providers, so he shot himself in the bathtub, according to a 2014 complaint filed with the state health department.

“Refusing to provide information or appropriate referrals directly led to the unnecessarily violent death of this patient,” said the complaint filed by an anonymous hospice nurse. “I strongly believe this constitutes patient abandonment.”

Lack of access was also an issue for Annette Schiller, 94, of Palm Desert, Calif., who was diagnosed with terminal thyroid and breast cancer and wanted lethal drugs.

“Almost all of her days were bad days,” recalled Linda Fitzgerald, Schiller’s daughter. “She said, ‘I want to do it.’ She was determined.”

Schiller’s hospice turned down her request, and she couldn’t find a local referral, forcing Linda Fitzgerald to scramble to fulfill her mother’s last wish.

“I thought it was going to be very simple and they would help us,” says Linda Fitzgerald. “Everything came up empty down here.”

Annette Schiller of Palm Desert, Calif., who was 94 and diagnosed with terminal thyroid and breast cancer, had trouble finding doctors to help her end her life under California’s new aid-in-dying law.

Opponents of aid in dying cite providers’ reluctance as evidence that the laws are flawed and the practice is repugnant to a profession trained to heal.

“People consider it a breaking of professional integrity,” says Dr. David Stevens, chief executive of Christian Medical & Dental Associations, which has worked to stop or overturn aid-in-dying laws in several states.

But those decisions can effectively isolate people in entire regions from a legal procedure approved by voters, advocates said.

In California’s Coachella Valley, where Annette Schiller lived, the three largest hospitals — Eisenhower Medical Center, Desert Regional Medical Center and John F. Kennedy Memorial Hospital — all opted out of the new state law. Affiliated doctors can’t use hospital premises, resources or systems in connection with aid in dying, hospital officials said.

“Eisenhower’s mission recognizes that death is a natural stage of the life journey and Eisenhower will not intentionally hasten it,” Dr. Alan Williamson, vice president of medical affairs of the non-profit hospital, said in a statement.

Doctors may provide information, refer patients to other sources or prescribe lethal drugs privately, Williamson said.

“All we have done is say it can’t be done in our facility,” he added.

In practice, however, that decision has had a chilling effect, says Dr. Howard Cohen, a Palm Springs hospice doctor whose firm also prohibits him from writing aid-in-dying prescriptions or serving as an attending physician.

“They may be free to write for it, but most of them work a full day. When and how are they going to write for it?” he said. “I don’t know of anyone here who is participating.”

Patients eligible for aid-in-dying laws include terminally ill adults with six months or less to live, who are mentally competent and can administer and ingest lethal medications themselves. Two doctors must verify that they meet the qualifications.

Many doctors in California remain reluctant to participate because of misunderstandings about what the law requires, says Dr. Jay W. Lee, past president of the California Academy of Family Physicians.

“I believe that there is still a strong taboo against talking about death openly in the medical community. It feels like a threat to what we are trained to do: preserve and extend life,” Lee says, adding that doctors have a moral obligation to address end-of-life concerns.

There’s no single list of doctors willing to prescribe life-ending drugs, though Compassion & Choices does offer a search tool to find participating health systems.

“They don’t want to be known as the ‘death docs,’ ” says Shavelson, who has supervised 22 deaths and accepted 18 other people who were eligible to use the law but died before they could, most within a required 15-day waiting period.

Officials with Compassion & Choices said past experience indicates that more providers will sign on as they become more familiar with the laws and their requirements.

At least one California provider, Huntington Hospital in Pasadena, originally said it wouldn’t participate in the law, but later changed its position.

Other health systems have opted to not only participate, but also to help patients navigate the rules. Kaiser Permanente, which operates in California and Colorado, has assisted several patients, including Annette Schiller, who switched her supplemental insurance to Kaiser to receive the care.

Within weeks, Schiller was examined by two doctors who confirmed that she was terminally ill and mentally competent. She received a prescription for the lethal drugs. On Aug. 17, she slowly ate a half-cup of applesauce mixed with Seconal, a powerful sedative.

“Within 20 seconds, she fell asleep,” her daughter recalled. “Within a really short time, she stopped breathing. It was amazingly peaceful.”

Complete Article HERE!

The virtual reality ‘death simulator’ that could help ease terminally ill patient’s fear of dying

It could be a helping hand for the terminally ill.

The moment of death: Researchers first used headset to trick participant’s brain into thinking their VR body is real. Then, they were taken out of the body to simulate an out of body experience.

By Mark Prigg

[R]esearchers have revealed a virtual reality simulation that can help people comes to terms with death.

It teaches then how to become ‘disconnected’ from their physical bodies.

Mel Slater at the University of Barcelona, Spain, and his team used an Oculus VR headset on 32 patients.

‘Immersive virtual reality can be used to visually substitute a person’s real body by a life-sized virtual body (VB) that is seen from first person perspective,’ they wrote.

Researchers fool the volunteers into thinking the virtual body was their own.

While wearing a headset, the body would match any real movements the volunteers made.

They were also fitted with movement sensors and vibrating units on their hands and feet.

When a virtual ball was dropped onto the foot of the virtual body, a vibration was triggered on the person’s real foot.

Once they became ‘in sync’ with the virtual body, participants were then transported to a virtual living room in which they could move their legs and kick balls thrown at them from a distance.

Then, they were taken out of the body.

‘The viewpoint of the participant was lifted out of the virtual body towards the ceiling of the virtual room, and just behind the body, so that the body could be seen below,’ the team wrote.

‘When the viewpoint is lifted up and out of the VB so that it is seen below this may result in an out-of-body experience (OBE).’

‘Fear of death in the experimental group was found to be lower than in the control group.

‘This is in line with previous reports that naturally occurring OBEs are often associated with enhanced belief in life after death.  

People who had felt totally disconnected from their body – and the virtual body – reported having a significantly lower fear of dying.

‘The effect was quite strong,’ Slater told New Scientist.

He hopes the experience might give a feeling that a person’s consciousness is separate from their physical body.

‘It gives a sense that it’s possible to survive beyond death,’ he says.

The virtual experience is similar to some kinds of near-death out-of-body experiences.

Some people who survive heart failure have described seeing the hospital room from the ceiling during critical moments, says Slater.

‘Our results open up the possibility that the virtual OBE experience provides an implicit learning that consciousness in the sense of the centre of perception can be separate from the physical body, and that therefore death of the physical body is not necessarily the end of consciousness,’ the researchers concluded.

Complete Article HERE!