05/26/18

What does a good death look like when you’re really old and ready to go?

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David Goodall a day before his assisted death in Switzerland.

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Hawaii recently joined the growing number of states and countries where doctor-assisted dying is legal. In these jurisdictions, help to die is rarely extended to those who don’t have a terminal illness. Yet, increasingly, very old people, without a terminal illness, who feel that they have lived too long, are arguing that they also have a right to such assistance.

Media coverage of David Goodall, the 104-year-old Australian scientist who travelled to Switzerland for assisted dying, demonstrates the level of public interest in ethical dilemmas at the extremities of life. Goodall wanted to die because he no longer enjoyed life. Shortly before his death, he told reporters that he spends most of his day just sitting. “What’s the use of that?” he asked.

Research shows that life can be a constant struggle for the very old, with social connections hard to sustain and health increasingly fragile. Studies looking specifically at the motivation for assisted dying among the very old show that many feel a deep sense of loneliness, tiredness, an inability to express their individuality by taking part in activities that are important to them, and a hatred of dependency.

Of the jurisdictions where assisted dying is legal, some make suffering the determinant (Canada, for example). Others require a prognosis of six months (California, for example). Mainly, though, the focus is on people who have a terminal illness because it is seen as less of an ethical problem to hasten the death of someone who is already dying than someone who is simply tired of life.

Why give precedence to physical suffering?

Assisted dying for people with psychological or existential reasons for wanting to end their life is unlikely to be supported by doctors because it is not objectively verifiable and also potentially remediable. In the Netherlands, despite the legal power to offer assistance where there is no life-limiting illness, doctors are seldom convinced of the unbearable nature of non-physical suffering, and so will rarely administer a lethal dose in such cases.

Although doctors may look to a physical diagnosis to give them confidence in their decision to hasten a patient’s death, physical symptoms are often not mentioned by the people they are assisting. Instead, the most common reason given by those who have received help to die is loss of autonomy. Other common reasons are to avoid burdening others and not being able to enjoy one’s life – the exact same reason given by Goodall. This suggests that requests from people with terminal illness, and from those who are just very old and ready to go, are not as different as both the law – and doctors’ interpretation of the law – claim them to be.

Sympathetic coverage

It seems that the general public does not draw a clear distinction either. Most of the media coverage of Goodall’s journey to Switzerland was sympathetic, to the dismay of opponents of assisted dying.

Media reports about ageing celebrities endorsing assisted dying in cases of both terminal illness and very old age, blur the distinction still further.

One of the reasons for this categorical confusion is that, at root, this debate is about what a good death looks like, and this doesn’t rely on prognosis; it relies on personality. And, it’s worth remembering, the personalities of the very old are as diverse as those of the very young.

David Goodall died listening to Beethoven’s Ode to Joy.
 
Discussion of assisted suicide often focuses on concerns that some older people may be exposed to coercion by carers or family members. But older people also play another role in this debate. They make up the rank and file activists of the global right-to-die movement. In this conflict of rights, protectionist impulses conflict with these older activists’ demands to die on their own terms and at a time of their own choosing.

In light of the unprecedented ageing of the world’s population and increasing longevity, it is important to think about what a good death looks like in deep old age. In an era when more jurisdictions are passing laws to permit doctor-assisted dying, the choreographed death of a 104-year-old, who died listening to Ode to Joy after enjoying a last fish supper, starts to look like a socially approved good death.

Complete Article HERE!

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05/24/18

The Medical Power of Attorney: What Do I Need to Know?

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What is a Medical Power of Attorney?

A Medical Power of Attorney is a legal instrument that allows you to select the person that you want to make healthcare decisions for you if and when you become unable to make them for yourself. The person you pick is representative for purposes of healthcare decision-making.

What Healthcare Decisions are you Talking About?

Any kind of decision that is related to your health that you allow. You could limit your representative to certain types of decisions. (For example, the decision to put you on life support when there is no hope of you getting better.) On the other hand, you could allow your representative to make any healthcare decision that might come up. This includes decisions to give, withhold or withdraw informed consent to any type of health care, including but not limited to, medical and surgical treatments. Other decisions that may be included are psychiatric treatment, nursing care, hospitalization, treatment in a nursing home, home health care and organ donation.

How is this Different from a Living Will?

A Living Will is a statement of decisions you made yourself. It tells the doctor that you do not want to be kept alive by machines, if there is no hope of getting better. A Medical Power of Attorney gives someone else the authority to make medical decisions for you if you are unable to make them for yourself. It is meant to deal with situations that you cannot predict. Because you cannot predict these situations, you cannot decide in advance what choice you would make. The Medical Power of Attorney allows you to pick the person that you trust to make to these kinds of decisions when you cannot make them yourself.

Do I Still Need a Living Will If I Have a Medical Power of Attorney?

Yes. Any decisions that you make in your Living Will must be followed by the person you name as your Medical Power of Attorney.

When Would I Need a Medical Power of Attorney?

A Medical Power of Attorney is used when you become unable to make healthcare decisions for yourself. For example, if you are unconscious after a car accident and you need a blood transfusion; if you are under anesthesia and you need to have a more extensive procedure than you initially consented to; or if you become mentally incompetent as a result of Alzheimer’s Disease and you need medical treatment.

How will I know if I am able to Make Healthcare Decisions for Myself?

A doctor or psychologist or advance practice nurse working with a doctor will make this determination. Commonly, the doctor will say that you lack the capacity to make healthcare decisions. He or she may also say that you are incapacitated. If you are conscious, you will be told that you have been found to be incapacitated and that your Medical Power of Attorney Representative will be making decisions regarding your treatment.

How Does the Doctor Decide that I am Unable to Make Medical Decisions for Myself?

The doctor, psychologist or advance nurse practitioner will evaluate your ability to:

  1. Appreciate the nature and implications of a health care decision; (Are you able understand what your doctor is telling you and understand the consequences of any choices t hat you make ?)
  2. Make an informed choice regarding the alternatives presented; (Are you able to process the information the doctor gives you and make your decision based on this process?) and
  3. Communicate that choice in an unambiguous manner. (Are you able to let your doctor know what you have decided? You may state your choice, write it down, or in some case, just nod your head. The important thing here is that there must be no doubt about what your are trying to express.)

If the doctor determines that you are unable to do these things, they must write this in your medical records. The doctor’s statement must include the reason why you were found to lack capacity.

Can the doctor say that I do not have the capacity to make Healthcare Decisions just because I am old or have a mental illness?

No. Simply being old or having a mental illness is not enough to support a finding that you do not have the capacity to make medical decisions. The doctor must complete the three part evaluation discussed above before he or she determines that you do not have the capacity to make healthcare decisions.

Does the Person I Name as Medical Power of Attorney have any Control Over My Medical Care if I can Still Make My Own Decisions?

No. The person you name as your Medical Power of Attorney has no authority until you become unable to make your own decisions.

Can I Name an Alternative or a Back-up Representative in Addition to My First Choice?

Yes. You may name one or more “successor representatives” to fill this role if your first choice is unable, unwilling or disqualified to serve.

What Kinds of Things Can the Person I Name as Medical Power of Attorney Do?

The person that you name as your Medical Power of Attorney representative can make any decisions related to your health care that you allow. These decisions could include giving, withholding or withdrawing informed consent to any type of health care, including but not limited to, medical and surgical treatments. Other decisions that may be included are life-prolonging interventions, psychiatric treatment, nursing care, hospitalization, treatment in a nursing home, home health care and organ donation. Your representative can have or control access to your medical records and decide about measures for the relief of pain.

Your Medical Power of Attorney can be as broad or as narrow as you want it to be. You can specifically write that your Medical Power Attorney Representative shall not have the power to make one of these decisions. Or, you can specifically state exactly what decision you want your Medical Power of Attorney Representative to make. For example, you might say that your representative cannot give a certain person access to your medical records.

How Can I Make Sure that the Decisions My Medical Power of Attorney Representative
Makes are Ones that I Would Agree With?

There are several things that you can do to help your representative make decisions that you would agree with.

  1. Write it down. You can include specific instructions in your Medical Power of Attorney to cover particular circumstances. You can also include a statement of your personal values to help your representative make decisions.
  2. Talk about your wishes. Discuss your wishes with the person you appoint as your Medical Power of Attorney representative. Tell them about your religious beliefs and personal values. Make sure that they know the things that you definitely would want as well as the things that you absolutely do not want.

Who should I name as my Medical Power of Attorney Representative?

You should pick someone that knows you well and that you trust to make healthcare decisions for you based on your personal wishes and values. You may or may not want to name a family member as your Medical Power of Attorney Representative. Keep in mind, that some of the decisions your representative will have to make will be very difficult. It might be difficult for some family members to overcome their own emotions and make decisions that are based on your personal values. The most important consideration in naming a Medical Power of Attorney Representative is to choose someone you trust to be able to make decisions based on the values and directions you have set out.

Can I appoint my doctor as my Medical Power of Attorney?

No, the law says that you cannot appoint your doctor as your Medical Power of Attorney. Additionally, the following people cannot serve as your Medical Power of Attorney:

  1. Any doctor, dentist, nurse, physician’s assistant, paramedic, or psychologist who is treating you, cannot serve as your Medical Power of Attorney representative;
  2. Any other person who is providing you with medical, dental, nursing, psychological services or other health services of any kind, cannot serve as your Medical Power of Attorney representative;
  3. Any employee of any doctor, dentist, nurse, physician’s assistant, paramedic, or psychologist who is treating you cannot serve as your Medical Power of Attorney representative, UNLESS the employee is your relative;
  4. Any employee of any other person who is providing you with medical, dental, nursing, psychological services or other health services of any kind cannot serve as your Medical Power of Attorney representative, UNLESS the employee is your relative;
  5. An operator of the hospital, psychiatric hospital, medical center, ambulatory health care facility, physicians’ office and clinic, extended care facility operated in connection with a hospital, nursing home, a hospital extended care facility operated in connection with a rehabilitation center, hospice, home health care, and any other facility established to administer health care that is currently serving you cannot serve as your Medical Power of Attorney representative.
  6. Any employee of an operator of a hospital, psychiatric hospital, medical center, ambulatory health care facility, physicians’ office and clinic, extended care facility operated in connection with a hospital, nursing home, a hospital extended care facility operated in connection with a rehabilitation center, hospice, home health care, and any other facility established to administer health care cannot serve as your Medical Power of Attorney representative, UNLESS the employee is your relative.

Does My Medical Power of Attorney Representative Have to Pay My Medical Bills?

No. A Medical Power of Attorney only gives the person you appoint authority to make healthcare related decisions. This does not include authority to pay your bills. For that you need a Durable Financial Power of Attorney. It is entirely possible that the same person may hold both your Medical Power of Attorney and your Financial Power of Attorney. However, if this is not the case, your Medical Power of Attorney Representative has no financial authority.

What Happens If I Appoint a Medical Power of Attorney and Then Someone Petitions to Have A Guardian Appointed for Me?

If you appoint a medical power of attorney and then someone petitions to have a guardian appointed for you, the court will give the person you appointed as medical power of attorney special consideration. In other words, the court will appoint the person you name as a medical power of attorney to be your guardian unless it finds that there is a good reason not to.

Can I Change My Mind After I Sign a Medical Power of Attorney?

Yes. As long as you have the capacity to do so, you can revoke your Medical Power of Attorney at any time by any of these methods.

  1. You can destroy the Medical Power of Attorney. Tear it up or burn it.
  2. You can tell someone else to destroy your Medical Power of Attorney. They must destroy it in your presence.
  3. You can write out a statement that you are revoking your Medical Power of Attorney. This statement must be signed and dated by you. This revocation does not become effective until you give it to your doctor.
  4. If you are not able to write, you can tell someone to write out a statement that you are revoking your Medical Power of Attorney. This person must be over 18 years old. This statement must also be signed and dated. You can tell the other person to sign your name on your be half. This revocation does not become effective until your doctor gets it. You can have the other person give it to them if you are not able to.

Is my Medical Power of Attorney Affected if I Get a Divorce?

Yes, if you named your spouse as your Medical Power of Attorney Representative or successor representative. When a final divorce decree is granted, the appointment of your spouse is automatically revoked. You will need to sign a new power of attorney. If you still want your former spouse to serve as your representative, he or she may do so, provided that you reappoint the m in a new Medical Power of Attorney.

What is Required to Make a Valid Medical Power of Attorney?

There are seven requirements:

  1. You must be an adult or have been determined to be a mature minor*;
  2. The Medical Power of Attorney must be in writing;
  3. You must sign it;
  4. You must date it;
  5. You must sign it in the presence of at least two witnesses, age 18 or older;
  6. A Notary Public must acknowledge these signatures;
  7. It should contain the following language or substantially similar language:

This Medical Power of Attorney shall become effective only upon my incapacity to give, withdraw, or withhold informed consent to my own medical care.

*Persons under 18 are presumed to lack capacity. In order to defeat this presumption, persons under 18 must undergo an examination by a doctor, or psychologist, or an advance practice nurse who is collaborating with a doctor and found to have the capacity to make health care decisions. Once this determination is made, these individuals are referred to as “mature minors.”

Who can be a Witness for my Medical Power of Attorney?

The law only requires that a witness to your Medical Power of Attorney be over eighteen years old. Additionally, the law says that the following people cannot be a witness to your Medical Power of Attorney:

  1. The person who signed your Medical Power of Attorney on your behalf and at your direction can not be a witness to your medical power of attorney;
  2. Anyone who is related to you by blood or marriage cannot be a witness to your medical power of attorney;
  3. Anyone who will inherit from you cannot be a witness to your medical power of attorney; (This can be under your will or under the laws that provide for the distribution of your property if you do not have a will.)
  4. Anyone who is legally obligated to pay for your medical c are cannot be a witness to your medical power of attorney;
  5. Your doctor cannot be a witness to your medical power of attorney;
  6. The person you have named as your Medical Power of Attorney or the person you have named as successor Medical Power of Attorney cannot be a witness to your medical power of attorney.

As part of the Medical Power of Attorney your witnesses must sign a statement that they do not fit any of these categories.

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05/10/18

I Graduated Law School — & Decided To Become A “Death Doula”

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By Annie Georgia Greenberg

“Death is inevitable. My life span is ever decreasing. Death comes whether or not I am prepared.” These are three of the nine contemplations on death written by Buddhist teacher Atisha — and Alua Arthur reads them to clients during death meditations. As a death doula and owner of Going With Grace, an end of life and death care company, Arthur (who graduated from law school before shifting to work in the death industry) facilitates these sessions to help people who are uncomfortable with the idea of death or dying.

“Death meditation is an opportunity for people that are struggling with some fears around death and dying to confront those fears head-on,” Arthur says. “It’s not for the faint of heart. It’s an opportunity to really think about the body’s eventual decline, and to go there to see what the discomfort is, so that we can then talk about that and process that. It’s intended to soften the fear around death.”

And, true to her claim, Arthur’s work is meant to soften fears around death. “Doula” is a word derived from a Greek term meaning, “women who serve.” As a death doula, she works with clients to plan for the final stage of their lives, holds space to support them emotionally through their deaths, and ensures their wishes are met.

Arthur developed a nine-part “Advanced Care Directive” that allows clients to list how they’d like to be cared for in the event of terminal illness. It includes everything from personal grooming preferences to thoughts on life support. By filling out Arthur’s document, a client can clearly state how they’d like their social media to be handled in the event of their death and whether they’d prefer to be embalmed, buried in a bio-urn (a seed pod for ashes that nourishes the earth and grows into a plant), or anything in between. She’s helped prepare for end of life with healthy millennials, large family groups, and even her own father.

Alua Arthur

Of course, when it comes to her own funeral, Arthur, who thinks about death “all day, every day” knows exactly what she wants. If possible, she’d prefer to die outside, at sunset. And she wants to be buried in a pink or orange raw silk shroud. Her funeral will be a party filled with music (Michael Jackson is a must on the playlist). She’d like her jewelry — an extensive collection of bangles and big earrings — hung on trees and for attendees to take the pieces they like. This tendency toward bright colors, generosity and liveliness mirrors Arthur’s sensibility in life. Her smile is contagious. Arthur’s yellow and magenta and green African-print frocks are a far cry from the drab, stereotypical wares one might associate with the death industry. In fact, there’s nothing grim about her or the work she does.

Yes, Arthur’s death consultations can be heartfelt and tearful to be sure, but, as she puts it, “death can definitely be funny.” And so, she approaches each conversation with a seemingly effortless but effective sense of levity. Arthur is part of a new trend in the death industry that favors pre-planning, personalization, and, ultimately, the normalization of death as a topic of conversation. In Arthur’s vision of the world, everyone over the age of 18 has an end of life plan and is willing to talk openly about death, she says.

“I think people don’t talk about death, because we’re not really comfortable with it,” she says. “Yet, whenever I talk about my work, people always talk to me about death… I think my work gives people permission to talk about this thing that we all want to talk about anyway, yet we’re just not doing.”

So, while many of us may not all be ready to recite the nine contemplations just yet, we can take comfort in the words Arthur uses to signs off on all of her Advanced Care Directives: “Yes, one day you and I will die, but before that day, let us live.” When she says those words out loud, she can’t help but smile.

Complete Article ↪HERE↩!

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05/6/18

When someone hovers at the edge of death, these singers step in to ease the passage

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Threshold Choir members pray before visiting a patient at the Halquist Memorial Inpatient Center in Arlington, Va.

by Debra Bruno

It’s a quiet afternoon at the Halquist Memorial Inpatient Center, a hospice, as four women huddle close, talking quietly in a tight circle before walking through the doors to sing to men and women on the threshold of death.

These women are part of the Threshold Choir, a group that brings the comfort of song to dying people.

A thin woman, who is in the last weeks of life, is the choir’s first stop. She is sitting nearly upright in a hospital bed, her daughter beside her. Leslie Kostrich, the group’s leader for this day, asks the older woman if she would like to hear a few songs. She nods; the singers set up folding stools and pull up close to her bed.

“We sing in a circle of love,” the women sing, a cappella and in three-part harmony. “In music we are joined.” As they sing, the woman gazes off with a faraway look in her eyes, as if she’s trying to remember something.

The group sings another song, and as they finish, the older woman claps softly. “Thank you,” she says. “Nice.”

It takes sensitivity, situational awareness and a dash of emotional intelligence to sing to the dying. The sound of soft harmonious voices can be very comforting as life closes down, but the songs can also bring forward the immediacy of death to family members sitting nearby. Singing in such an emotional environment takes practice and a recognition that it is less a performance than a service.

For the dying and their families, the singers are hoping to bring peace, comfort and a feeling of love. “We call it kindness made audible,” says Jan Booth, who with Kostrich is co-director of the Washington-area Threshold group.

It is also very life-affirming for those who sing in this unusual choir.

“When I tell people I’m in a choir that sings at the bedside of the dying, they’ll say, ‘Oh girl, what a good thing,’ or ‘Girl, you must have lost your mind,’ ” says Kadija Ash, 66.

But the opposite is true. “Sometimes I run” to rehearsals, she says, “because of the healing.” In the two years she has been a member of Threshold, Ash says, she has gone from having a fear of death to an ability to be more accepting of life’s ups and downs.

Kostrich, 60, who has been with the group for three years, likewise says: “This has changed my life. That’s not an exaggeration. It gave my life a spiritual dimension that I was totally unprepared to receive.”

Threshold Choir — which has more than 200 groups around the world — seems to have tapped into something both primal and much-needed: a growing desire not to recoil from death or abandon the dying but to face that ultimate truth and figure out how to help ease the isolation of those near the end.

Bedside singing is a way of “normalizing death,” says Kate Munger, 68, who founded the first group in the San Francisco area 18 years ago. Many of the choirs are started and run by baby boomers, who are comfortable shaking up the accepted way of doing things, Munger says. “We’ve done that for childbirth, for education, and now for our impending death.” She says the number of people participating in Threshold Choir has grown to about 2,000.

Similar deathbed choirs have also surged, including Hallowell Singers, based in Vermont, which recently celebrated its 15th year, says founder Kathy Leo. She estimates that Hallowell has as many as 100 spinoffs, mainly in the United States.

Although they sing some requested songs, such as “Amazing Grace,” Threshold Choir mostly uses a repertoire designed for singing around a dying person. The pieces tend to be limited to just a few words, and sung without accompaniment in three-part harmony.

The idea is to keep things simple and not tied to any spiritual tradition — for instance, “Thank you for your love” and “We are all just walking each other home.” Complicated verses could intrude on the process of dying, which often involves people retreating from the day-to-day and reviewing their lives.

During the afternoon at Halquist, the four Threshold singers — Booth, Kostrich, Ash and Margo Silberstein — move out into a hallway after their first group of songs. One hospice staffer says, “I love working on Thursdays because I love listening to this group.”

The group slips into another large room with four beds separated by curtains. A frail woman with brilliant blue eyes smiles at the group. In another bed, someone is making noises that are halfway between breathing and groaning.

The blue-eyed woman asks, “Do you know ‘A Mighty Fortress?’ ” The group knows some of the words to the hymn but ends up mostly singing “oooo” to its tune. After they finish, Kostrich offers, “We do have ‘Amazing Grace.’ ” “Oh yes,” the woman answers and quietly sings along with them. After they finish, she says: “Oh, thank you. That was just wonderful.” They go on to sing “Simple Gifts” and “He’s Got the Whole World in His Hands” and then a few Threshold songs.

A TV next to a different bed blares.

After they finish, they approach a man sitting at the bedside of a woman. Can they sing?

“She’s pretty well gone out, but you can try,” he says.

As they sing “Hold this family in your heart,” the man’s eyes redden. He shifts in his seat. They sing, “Rest easy, let every trouble drift away.” His chin starts to tremble. As they begin to sing “You are not alone,” the woman begins to breathe more loudly but doesn’t move. The woman in the bed across the room, where they first sang, calls out, “Beautiful!”

An hour later, as the group gets ready to leave the hospice, Kostrich says that singing with Threshold has given her a way to process her own family’s experiences with death. When her parents were dying in the 1980s, Kostrich says, no one acknowledged they were close to death, which didn’t allow her and her family to come to terms with the losses themselves. The Threshold Choir has both helped her in a small way alleviate her own loss and help others avoid that kind of pain, she says.

There’s another thing that comes out of Threshold singing: community. And that feeling is evident when group members get together for a twice-a-month rehearsal, often in a church basement in the District. All but one singer at this rehearsal is female, but they range in age from 20-somethings to 70-somethings, African American, Chinese and white, those with tattoos and those with carefully coifed hairdos. There are a lot of hugs and laughter.

Olivia Mellon Shapiro, 71, says that group members are her “kindred spirits.” When she retired from her work as a psychotherapist, she told a friend, “Now I want to sing people out in hospices,” Shapiro says. “My father sang himself out — he died singing, and I was very moved by that.” Her friend said, “Oh, that’s the Threshold Choir.”

“Now I have a new group that feels like home to me. It really does,” she says. “I’ve also always been a little afraid of death and dying, but I’ve always loved the idea of hospices. So the idea of singing people out in hospices to get more comfortable with the idea of death and dying appealed to me.”

(The group sings several times a month at Halquist in Arlington and also at Providence Hospital in Northeast D.C. through the nonprofit hospice provider Capital Caring.)

One of the singers, Lily Chang, 28, notes that the choir is helping her confront her own fears of loss.

Chang says she’s very close to her grandmother and, given her age, worries about her. “I remember telling my mom, ‘I don’t know what I would do’ ” if she died. “Thinking about it, engaging with it in different ways makes me feel better.”

Complete Article HERE!

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04/29/18

Death doulas provide comfort on final journey: ‘We know how to die’

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End-of-life doulas fill an emotional gap between doctors, family and attitudes about dying. 

Christy Marek, a certified death doula from Lakeville, is part of a new field that reflects gradually more open attitudes toward death.

By

We should be better at dying.

That sounds judgmental, but it’s more akin to wishful thinking.

While death is a certainty, it’s rarely a goal, so we tend to resist, to worry, to grasp at new treatments or old beliefs.

But the emerging death doula movement offers another option: We can’t change the destination, but we can improve the journey.

The term doula is more linked to childbirth, describing someone present during labor to help a mother feel safe and comfortable. There’s no medical role; doulas are companions and listeners. They attend.

End-of-life doulas, also called death doulas or death midwives, similarly are attuned to a dying person’s emotional needs.

“It’s about filling a gap that the system doesn’t acknowledge,” said Christy Marek, an end-of-life doula from Lakeville. “The system is designed to tend the body. But when you get into the lonely feelings, the mess of real life, the expectations and beliefs around dying — those things don’t fit into the existing system.”

In some ways, death doulas signal a return to earlier times, when ailing parents lived with children, when life-extending options were fewer.

“Death was more of a ritual, really laboring with someone as they were dying,” said Jeri Glatter, vice president of the International End of Life Doula Association (INELDA) in New Jersey.

Family and friends “felt a sense of acceptance and completion and a knowledge that they had fully honored someone,” she said. “It’s the most loving act that they could do.”

Over time, though, “we became a very medicated society — and thank God for that. I don’t want to diminish that,” Glatter said. But medical options can create a sense of disconnect with our inevitable mortality. When those options are exhausted, “we say we’ll house them, make sure they have medication and have a bed that goes up and down.

“But people are saying, ‘I don’t feel OK about this.’ ”

Marek is the first end-of-life doula in Minnesota certified by INELDA, credited with creating the first death doula program for hospitals and hospices in 2003. It offered its first public training in 2015; last year, 700 people attended 18 sessions. Several other groups in Minnesota and elsewhere offer training and doula directories.

Glatter said the trend has roots with those who used birth doulas in the 1980s.

“These people now are burying their parents. Just as with birth, as we labor into the world fully engaged in that process, they’re saying, ‘I want to be fully engaged in this process.’ Doulas are the bookends of life.”

How can we do this together?

What does it mean to be fully engaged? Whatever the dying person wants it to mean.

“Is the person having their own experience, instead of trying to meet the expectations of the family?” Marek asked. “I’m there to create a space for the person who is dying to ask, ‘How can we do this together?’ ”

One woman, for example, asked Marek to tell everyone that she wanted acknowledgment — a greeting — each time someone entered her room, “even though it may look like she’s sleeping.”

Marek added, “I have no agenda other than reflecting to that person what they are saying, what they are feeling. I can give directions to family and friends, which is a comfort to the dying person because then people around them know what to do — and they feel listened to.”

As part of a new field, doulas occupy a niche among doctors, family, hospice and other factors. Sometimes, doulas fill practical needs, gathering paperwork or helping with funeral plans, particularly if relatives are distant, either geographically or emotionally.

More often, though, their roles are more personal: creating a vigil environment, writing letters to loved ones, helping family members recognize the signs of dying such as a change in breath and, finally, helping survivors deal with their loss.

Glatter said that doctors or hospital personnel sometimes worry that a doula will infringe upon medical decisions. But doulas have no medical role, and may even be able to provide information that doesn’t come up in medical conversations, “such as, ‘Do you know there’s a son with a restraining order?’ ”

Doulas’ lack of medical standing also enables consistency. Doctors may change. Hospice care may be suspended. “But a doula provides a continuity of care no matter what treatments are being done or not,” Marek said.

Dying as a creative process

Marek, 47, appears to wear not a speck of makeup. The physical transparency mirrors her comfort with the emotions that dying can expose. But it took her years to reach this point.

With a degree in child psychology, she intended to work with youngsters. Then she met a child life specialist, a field of which she’d never heard, describing someone who works with children with acute, often fatal, illnesses.

“It was like a lightning bolt went through me,” she said. “I knew that someday I would work with people who are dying. And it scared the pants off me!”

She went on to do other work, in the course of which she explored yoga, shamanism, writing, painting and more. She studied to become an anam cara, from pre-Christian Celtic spirituality that translates as “soul friend.”

Every few years, the idea of working with dying people surfaced, but never took hold. Then, five years ago, she learned about applying doula principles to the dying process. This time, the idea came cast as “the creative process at the end of your life,” and her path was clear.

“I feel like this has been following me my whole life,” Marek said. She took the training through INELDA, which includes vigil planning, working with the survivors, and self-care for doulas themselves. She founded a business, Tending Life at the Threshold.

“As doulas, we’re trying to normalize the experience of death,” Marek said.

She recalled one woman who said that her mother would love it if Marek would read the book of Psalms or a Hail Mary. “And I told her, ‘I can certainly do that. But it would be more meaningful if you did.’ ”

Once family members and friends learn that it’s OK to “lean into the pain,” she said, they may find a sense of comfort and ease with dying that, in turn, proves a gift to their loved one.

Another support system

Karen Axeen had been sick for what seemed like forever, after years of breast cancer and ovarian cancer and other chronic illnesses.

After spending almost all of 2016 in the hospital, she decided to enter hospice care. She also decided that she wanted a doula at her side.

“She kind of fell into the idea, talking with the hospital social workers,” said her daughter, Laura Fennell, who lives in Marshall, Minn. “I don’t live close by, so I think it was really helpful for her.”

Working with Marek, Axeen developed what’s often called a legacy project. In this case, she wrote several letters to each of her six grandchildren, to be read as they grow older.

“She wrote letters to be read on their 16th and 18th birthdays, on their wedding days, on the first day they have kids of their own,” Fennell said.

“I think I probably would have been lost after my mom had passed away, but Christy had everything organized,” she added. “It’s definitely a great service for those who don’t have family in the area.”

End-of-life doulas “are another support system,” Fennell said. “It was important for Mom to be able to get to know someone closely and have them walk her through the final process of life.”

Axeen died on Sept. 23, 2017, at age 57.

‘We know how to die’

Some death doulas volunteer with hospices or churches. Others work in hospitals, while others set up private practices.

Glatter mentioned a California prison where inmates with life sentences became end-of-life doulas “because they wanted to be able to care for their own,” she said. “They’re really an extraordinary group of men who wanted to pay their debt to society by helping other inmates as they die.”

An article in Money magazine included death doulas among “seven new jobs that reflect what’s important in 2017.” Also listed, compost collectors and vegan butchers.

The death doula trend reflects gradually more open attitudes toward death. Surveys show that 80 percent of Americans would prefer to die at home if possible, but few are able to. Yet the landscape slowly is changing. Hospital deaths slowly declined from 2000 to 2010. In that time, deaths in the home grew from 23 percent to 27 percent. Deaths in nursing homes held steady at about 20 percent.

The Centers for Disease Control suggested that the shifts reflect more use of hospice care. As the dying process becomes, for some, more grounded in the home, end-of-life doulas may become more familiar and, in Marek’s vision, help make death a natural part of life.

She reached that vision, in part, during an outdoor meditation project she began in 2014. For 1,000 days, she meditated for 20 minutes outdoors, no matter the weather. (It’s on Instagram as wonderofallthings.)

“Sometimes I’d be thinking, ‘This is awful. But that’s OK,’ ” she said. “It helped me develop a tolerance for whatever is happening, and to stay close to the fact that none of us is immune to the cycles of nature, including death.

“If you can sit when it’s uncomfortable — to be able to sit in the unknown — that’s huge.”

While family members may not be at peace with someone’s death, she added, they can be at ease with it as a natural outcome of life.

“One thing I believe firmly is that we know how to do this,” she said. “We know how to die, like every creature of nature does. We just need to get out of our own way.”

Complete Article HERE!

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04/27/18

Head for the right exit

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Many writers have tried to encourage conversations about dying, often with the aim of helping us achieve a ‘good death’.

Intensive care specialist Charlie Corke.

By Jane Mccredie

At dusk some years ago, I walked past an open doorway in the southern Italian village of Paestum. Just inside, a body lay on a table, candles surrounding it, as locals filed in and out, paying their respects.

It struck me at the time how different this was from the general Australian experience, where the end of life is sanitised, hidden and often medicalised to the point of cruelty.

For centuries, our ancestors would have tended their dying relatives, washed their bodies, stood vigil over them in the homes where they lived and died. Many people around the world still do this, of course, but we in the West are more likely to end our days in aged care or, worse, a hospital intensive care unit. We may be subjected to futile, traumatic interventions right up to the moment we take our last breath.

In recent years a number of writers have sought to encourage franker conversations about dying, often with the stated aim of helping us to achieve a “good death”. Notable local books have come from intensive care physician Ken Hillman, general practitioner Leah Kaminsky and science writer Bianca Nogrady. But the reluctance to talk about death remains.

“It has become taboo to mention dying,” writes British palliative care physician Kathryn Mannix in With the End in Mind:

This has been a gradual transition, and since we have lost familiarity with the process, we are now also losing the vocabulary that describes it. Euphemisms like “passed” or “lost’’ have replaced “died” and “dead”. Illness has become a “battle”, and sick people, treatments and outcomes are described in metaphors of warfare. No matter that a life was well-lived, that an individual was contented with their achievements and satisfied by their lifetime’s tally of rich experiences: at the end of their life they will be described as having “lost their battle”, rather than simply having died.

We must reclaim the language of dying, Mannix argues. Clear, unambiguous conversations about what is ahead offer support to the dying person as well as those who will mourn their death. “Pretence and well-intentioned lies” separate the dying from those they love, wasting the ­limited time they have left. Mannix first discovered the power of straightforward lang­uage as a junior doctor when a superior offered to describe to an anxious patient “what dying will be like”. “If he describes what? I heard myself shriek in my head.”

The senior doctor went on to describe in detail the pattern of dying he had observed over years of practice: increasing tiredness, more time spent sleeping, a gradual drift into unconsciousness, followed by changed respiratory rhythms until the breath finally stopped. “No sudden rush of pain at the end. No feeling of fading away. No panic. Just very peaceful … ” he told the patient.

Back in the tearoom, he told the young Dr Mannix this was probably the most helpful gift they could give their patients. “Few have seen a death,” he explained. “Most imagine dying to be agonised and undignified. We can help them to know that we do not see that, and that they need not fear that their families will see ­something terrible.” Mannix was left amazed that it was possible to be this honest with patients­, revising her “ill-conceived beliefs about what people can bear”, beliefs that could have prevented her from having the courage to tell the truth.

Over the decades since that paradigm-­shifting experience, she helped countless people of all ages and backgrounds through the final stages of their lives. Their stories are threaded through this moving and informative book. “The process of dying is recognisable,” Mannix writes:

There are clear stages, a predictable sequence of events. In the generations of humanity before dying was hijacked into hospitals, the process was common knowledge and had been seen many times by anyone who lived into their thirties or forties. Most communities relied on local wise women to support patient and family during and after a death, much as they did (and still do) during and after a birth. The art of dying has become a forgotten wisdom, but every deathbed is an opportunity to restore that wisdom to those who will live, to benefit from it as they face other deaths in the future, including their own.

In Letting Go: How to Plan for a Good Death, Australian intensive care specialist Charlie Corke offers­ practical tools to help people make and communicate decisions about how they would want to be treated at the end of life.

Corke’s professional experience leads him to paint a very ­different picture of dying from that offered by Mannix. The ­specialties of intensive and palliative care are in some ways polar opposites: intensive care does everything possible to ward off the inevitable, while palliative care accepts death, seeking to ease the patient’s approach to it.

Corke admires the triumphs of modern medicine and the many achievements of his specialty, but he has also seen how easy it is for medical treatment to go too far. Most of us will die in old age, after a long period of declining health, he writes. One crisis or another will lead to us being taken to hospital by ambulance where, in the absence of clear ­instructions from us, medical intervention will escalate:

We will spend our last days connected to machines, cared for by strangers, and separated from our family. We will experience significant suffering, discomfort and indignity, receiving increasingly intense treatment that has a diminishing chance of success. Medical technology will dominate our last days and weeks. Our family will be excluded from the bedside, huddled in the waiting room, while “important” things are done to us. Time for connection and comforting, for any sort of intimacy or the opportunity to say goodbyes, will be missed …

Books on dying: With the End in Mind; Letting Go; Every Note Played

The purpose of this book is to help people avoid that outcome. Corke offers clear advice on questions to ask doctors, on writing and sharing a plan, and on appointing a substitute decision-maker to step in if we are unable to express our own views.

Above all, he stresses the importance of clear, unambiguous communication about what we want to happen at the end of life. If there is any doubt about our wishes, maximum intervention will be the result:

Wishes matter, but it can be difficult to get them heard. Wanting to be saved is easy. “To do whatever is required to save” is what everyone wants to do for you, needs to do, and is expected to do. It’s what our medical system is designed to do. It’s the default; it’s what you get. When we want to set limits, it’s more difficult …

All in all, this is a useful how-to manual for everybody who will at some point face death (which is of course all of us).

In Every Note Played, Lisa Genova chooses a different form to explore the end of life.

Over the decade since publication of her first novel, Still Alice, which was filmed with Julianne Moore in the lead role, Genova has mined her background as a neuroscientist for fictional ­material, producing novels about ­dementia, autism, traumatic brain injury and Huntington’s disease. In her fifth novel, she turns her attention to amyotrophic lateral sclerosis, telling the story of Richard, an acclaimed concert pianist diagnosed with the disease at the height of his career.

ALS is the central, and strongest, character in this book, dwarfing the somewhat one-­dimensional human actors and the overneat redemptions they achieve. The merciless progression of the neuro­degenerative condition is described with elegant, sometimes gruesome, precision as Richard loses the ability to control first his arms, then legs and, ultimately, everything but his eyes

As in the real-life case studies presented by Corke and Mannix, the approach of death pre­sents Richard and those close to him with appalling dilemmas: How much can we ask of others? How far should we go to preserve life? What does quality of life mean?

Richard’s state of mind as his disease progresses is not helped by the hearty refusal of his brothers to accept the inevitability of his fate. “What are you doing to fight it?” one asks when he sees Richard in a wheelchair. “You gotta stay positive. You should go to the gym, lift some weights and strengthen your leg muscles. If this disease starts stealing your muscle mass, you get ahead of it and build more. You beat it.”

Richard manages a slurred response — “Goo-i-de-a” — while privately wondering at his footballer brother’s incomprehension of his condition:

Is living at any cost winning? ALS isn’t a game of football. This disease doesn’t wear a numbered jersey, lose a star player to injury, or suffer a bad season. It is a faceless enemy, an opponent with no Achilles’ heel and an undefeated record … High tide is coming. The height and grandeur of the sand castle doesn’t matter. The sea is eventually going to rush in, sweeping every single grain of sand away.

Richard’s brothers, like all of us, might have benefited from a share in what Mannix refers to as her “peculiar familiarity with death”:

Strangely, this is not a burden or a sadness, but a lightning of perspective and a joyful spark of hope, a consciousness that everything passes, whether good or bad, and the only time we can really experience is this present, evanescent moment.

Complete Article HERE!

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04/23/18

Dying with Dignity: A look at the life of a hospice nurse

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BY ZACK WAJSGRAS

The final months of a person’s life are a confusing time for both the person and his or her family. Not only do final preparations have to be made, but the emotional stress of impending loss leaves many overwhelmed as grief makes tough decisions increasingly onerous.

Often, families seek professional help in the form of assisted living centers to alleviate the burden as their loved ones age. But once a patient receives a diagnosis that he most likely has less than six months to live, a new option becomes available: Hospice care.

Lee Read, a case manager with Hospice of the Piedmont, manages more than two dozen hospice patients at the Greenbrier and Hollymead locations of RoseWood Village Assisted Living centers, most of whom have dementia. Her organization, a community-based non-profit headquartered next to Sentara Martha Jefferson Hospital, focuses on end-of-life care for patients living all across Central Virginia. Read’s ultimate responsibility, and the company’s vision statement, is to make sure “nobody dies alone or in pain.”

Lee Read speaks on the phone at the RoseWood Village assisted living home on Greenbrier Drive near the nurses work station. Read’s job involves constant calls with doctors, family members of patients, insurers and other Hospice of the Piedmont staff.

In doing that, she manages the medications, equipment orders, triage care, dietary requirements and everything else her patients need to remain comfortable. She also serves as a liaison for the insurance companies, doctors and family members involved with her ever-changing caseload. While most healthcare professionals develop relationships with their clientele, hospice workers watch almost all of their patients die, making the emotional impact an additional challenge.

“I think over time you develop a thick skin,” Read said. “Otherwise, you could take on so much [emotion] that you become almost debilitated or think that you really can solve all those [health] problems, and [you] can’t.”

Dora Goldberg, 90, poses for a portrait at the RoseWood Village assisted living home on Greenbrier Drive after a game of bingo. Goldberg is one of Lee Read’s patients and suffers from dementia, like many of Read’s patients.

Read has a minimum number of required visits for each patient that is based on Medicare requirements, usually ranging from two to four times a week, during which she tracks each patient’s condition and determines what he or she needs. After six months, a patient can recertify if her condition is still declining and their diagnosis is the same, or she can “graduate” if her condition improves. She also works with a team that includes a social worker, a chaplain, certified nursing assistants and supervisors who specialize in different parts of the care process.Once a week, the team meets at the company headquarters to discuss the status of each patient and figure out what needs to be accomplished in the week ahead. Each meeting also includes a moment of silence, after which a ceremonial marble is dropped in a vase for each patient who has died since the last meeting. While it is marbles this time, each year a new symbolic object is chosen.

For Read, hospice was not her first career path. After graduating from William and Mary with a pre-med degree, she pursued a master’s in divinity from Columbia Theological Seminary in Georgia. She then went on to become a chaplain at the University of Virginia and Westminster-Canterbury of the Blue Ridge retirement home in Charlottesville.

But two events changed her perspective and led her back to health care. Her father received hospice care at the end of his life, and her 4-year-old son was diagnosed with cancer within a short span of time. Her son survived the disease, but the experience inspired her to go to nursing school. She also completed the majority of the requirements for a degree in social work, giving her formal education in nearly every function her team at Hospice of the Piedmont performs.

Lee Read holds a patients arm in the common room of the RoseWood Village assisted living home at Hollymead Town Center.

Her interest in helping people resulted in a career defined by “moving to different spots around the bed” of her patients, training her to fulfill both their spiritual and healthcare needs.

For Jeannie Holden, whose mother, Dora, is one of Read’s patients, hospice care came in a time of need.

“I can look back at the emotional part of that [decision] and how difficult it was. My mother was in the hospital, and she had sepsis, and we really didn’t think she was going to pull through,” Holden said. “Up until that point, I didn’t know that I really had any options.”

But after discovering Hospice of the Piedmont, that process became much easier.

“From the get-go, the care, the resources, the on call, the always being there from the social worker to their chaplain, [they] let me know they were there for me as well as my mother,” Holden said. “I always think that there’s more that I can do and I always have to be available, and they’ve helped me to realize that I am doing enough.”

For those who might be in a similar position, Holden said, it’s important to know the reality of hospice.

Lee Read (right) speaks on the phone at the foot of Juanita Burke’s, 97, bed at the RoseWood Village assisted living home at Hollymead Town Center. Burke, who had little strength left, died several days later.

“It’s not synonymous with death being imminent, [but] that it is certainly an end-of-life process,” Holden said. “Hospice can help you maneuver through and help you on the path to accepting that a loved one is at their end of life, [and] they help to make that quality of end of life good, to the best that they can.”

Even after dealing with death personally, professionally, theologically and medically, though, Read is still puzzled by life’s biggest questions.

“I certainly don’t have all the answers, and I’m not even that comfortable when I’m around people that have all the answers, whether it’s a religion or even a company. I like the questions and I like looking for the answers together,” she said. “It’s not my death; it’s not my journey. I am privileged to walk on the ground of the sacred journey of whoever is dying, but it’s their death.”

The families she works with often ask many of those same questions, to which she usually says, “I don’t know, but we’ll be here.”

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