Some Thoughts on The Dying Process: Dying Wisely and Well, Part 2

Look for Part 1 of this series HERE!

One to Two Weeks Prior to Death

Disorientation

Expect that you will be sleeping most of the time now. As you die, consciousness will be harder for you to maintain. Those who attend you will be able to arouse you from your slumber, but upon awakening you may experience a period of disorientation.saying-goodbye11

Those around you may find you confused at times. They may even report that while you slept you seemed to talk to people who were not there. Your sleep may appear to some as restless and fitful. This will most likely add to the agitation of those who witness it. They may misinterpret these events and imagine that you are in distress.

If you are not in distress, you can reassure them with confidence that this, too, is natural and that they should be at ease.

Breathing exercises like those practiced by expectant mothers, deep and paced, are helpful for all concerned.

Remember you are in charge of your dying environment. The anxiety of those who attend you, if left unchecked, can disturb your sense of well-being and cost you the serenity you seek.

Physical Changes
As you approach your death there will be discernible changes in your body. For example, you will lose weight. Your blood pressure will drop. Your pulse rate will either increase from its usual range to upwards of one hundred fifty beats per minute, or decrease to near zero.

physical signs of dyingYour body temperature may fluctuate wildly. At times you will feel feverish, at other times you will feel a chill. You will experience an increase in perspiration, and what some describe as clamminess.

Those who attend you should be prepared to deal with all these eventualities. Cold compresses and extra blankets should always be easily available.

Your skin color will change: flushing with fever at one minute, becoming bluish with cold at another. Often a pale yellowish pallor will appear. Your hands and feet will become pale or even bluish as your heart’s ability to move sufficient blood through your body diminishes.

Expect your appendages and abdomen to swell and change color as bodily fluids begin to pool. This can also result in a change in your skin’s texture.

Gentle massage with a light lotion is comforting for both you and the person doing the massage. Don’t be afraid to ask for touch.death_and_dying

Your breathing will also begin to change. At times your respiration rate will increase from its usual range to forty breaths a minute or more. At other times your respiration rate will decrease to nine or even six breaths a minute.

You will want to prepare those who attend you for when you will stop rhythmic breathing altogether. This most often occurs during sleep.

Congestion in your lungs will cause a rattling sound in your lungs and upper throat, and may be accompanied by a dry cough. All of these changes will come and go.

Have those who attend you keep your mouth and lips moist. Ice chips on your tongue and glycerin swabs for your mouth and lips are ideal for this purpose.

One or Two Days to Just Hours Prior to Death

coping-with-death-processYou may have a surge of energy just before death, particularly if you have recently discontinued all your medications, except those you take for pain control. (Many of the medications you consume to treat your illness can have unfortunate side effects. Eliminating them during your dying process often gives your body an opportunity to rebound, resulting in an energy surge.)

You may have periods of heightened alertness and clarity unlike what you have become used to. You may resume eating even though you may not have eaten anything for days.

You may even have a renewed interest in being with people. This is an ideal time for closure with those you love. Giving and receiving farewells and offering blessings, as well as ritualizing this most important passage can be uplifting and life affirming for all involved.

If you are afforded this effervescence, know that it will be short lived. Time is at its most precious now. Use it wisely.

Immediately following this small window of renewed vigor the signs of death’s embrace will become more pronounced.

This can be a time of great distress for those who will survive you. They may have misinterpreted your rally of just days or even hours ago to mean that you are getting better. They should be reassured before this happens that all is on course and that your death is near.

There will be an increase in restlessness now as your body tries to compensate for a decrease in oxygen in the blood. Your breathing will become slower and more labored. It’s not unusual for your breathing to stop for long periods before resuming. Sounds produced by the congestion in your lungs will become more audible.

Those who attend you can ease your labored breathing by changing your position in bed.
Don’t expect to be present during much, if any, of this final stage. Your work is done. All you have to do now is let go. Nature will take care of the rest.

If you are registering any sensory input at all during this time it is most likely through your sense of hearing.

Those who attend you should be aware that they can be an enormous help to you at this time. To die peacefully with soft music playing in the background and with words of goodbye and thank you ringing in your ears will make all the difference in the world for both you and them.

Your eyes may be open or semi-open but you’re not seeing anything. For all intents and purposes, you are no longer here. All that remains is for your body’s mechanical systems to shut down.crying

Your eyes will have a glassy look to them or they will be tearing. Your hands and feet are now purplish, your extremities, back and buttocks are blotchy. Your dying is complete when you stop breathing.

However, what appears to be your last breath often is not. One or two long-spaced breaths at the last moments of life are not uncommon. When these finally subside, you are dead.

Your death, like most things in life, needs formal recognition. An official such as a doctor, hospice nurse or coroner must make that pronouncement.

Conclusion

Some final thoughts.
Throughout your dying process, those who survive and attend you will be looking to you for direction. They will expect and want you to express your needs and desires for as long as you are able. But even when you are no longer able to communicate in any form, crucial decisions continually need to be made. For example, when would you like life support systems such as oxygen removed, and by whom?

The wise person will have clearly and unambiguously addressed all such concerns both verbally and in writing. Durable Power documents and/or a Living Will are specifically designed for this purpose.

Remember there is no one particular way of dying well. In the final analysis, you will probably die the way you lived. However, if you wish to achieve an awareness, appreciation and acceptance of your own dying while participating in it, you can, but it will take work and commitment.

This kind of conscious dying won’t eliminate the pain and poignancy of separation, but hopefully you will learn how to face these and live through them to the end.

Good luck.

Some Thoughts on The Dying Process: Dying Wisely and Well, Part 1

Introduction

No doubt you will approach your death in your own way, bringing to the actively dying phase of life a uniqueness all your own. What follows are some of my personal thoughts on dying wisely and well.

epicurus2

I don’t want to suggest that any of this is either conclusive or absolute. It is not. You may find that some of the things suggested below are present in sequence in your dying, or none may be. Your dying process may take months or just hours. What you can count on is that, short of a miracle, you will need to be the one to take the lead in all of this. Those who attend and survive you, even some of your physicians and other health care providers, will need a mentor, and the person best situated for that role is you.

I present this idealized scenario at some risk of being misunderstood. This is not about adjusting your deathbed pillows so that you can strike heroic poses for the edification of onlookers. Rather it is about achieving a good and wise death in the context of real dying, with all its unpredictability, disfigurement, pain, and sorrow.

I advise you not to think about your dying process in terms of a schedule, where one event follows naturally from the one before.quotes

Your dying, like the rest of your life, will no doubt be full of surprises. However, there are benchmarks that you should know about just in case they occur as you die.

Start with the things listed below as a baseline. You may find that some of these changes may begin to occur as early as three months before you actually die. Or you may find that your actively dying stage may begin as late as a week or even days prior to your death. The most important thing will be for you to heed the promptings of your mind and body. Hopefully these will signal you to begin a movement from struggling against dying to one of acceptance and acquiescence.

Please do not confuse acceptance and acquiescence with resignation and succumbing. Resignation and succumbing are passive, as in ‘something just overpowered me and I had no choice but to give up.’ Resignation is based in self-pity, believing that ‘in my dying I am powerless.’

Acceptance and acquiescence, on the other hand, are positive acts. ‘I choose to let go, to relinquish control and to accept living and dying for what they are.’ Wisdom comes in knowing when and where you are powerful and what the source of that power is.

One to Three Months Prior to Death – Turning Inward

By the time you realize you are actually dying, you will find that you have already begun to withdraw from the world around you. You will have less interest in the internet, newspapers or television, for example. You will invite fewer people to visit. In fact, you will probably have to practice saying, “Thank you, but I don’t feel like company today.”

why meYou will find that even the people dearest to you will begin to figure less and less prominently in your scheme of things. This process of detachment is good. It is a necessary component of the dying process and is precisely what will help make the inevitable separation easier on everyone involved.

This is a time of turning inward and it can be a time of great insight for you. It will provide you an opportunity to sort things out, to evaluate yourself and the life you’ve lived. In other words, it can be a time to come to understanding about the meaning of your life and death.

Often this process is done with eyes closed, in a sort of meditation. It ought not to be confused with sleep, although your need for sleep will also increase at this time. You may add a morning nap to your usual afternoon nap. You may even be staying in bed all day and sleeping most of the time.

Those who attend you may not be attuned to the meaning of this inward turn and may become distressed. They may think it’s a sign of depression. It’s not. If you are able, try to reassure them that this is natural and that some quiet reflection on their part might bring them more into sync with you.

This inward turn will bring less of a need for verbal communication with others. Words are how living people communicate; touch and silence are how you will communicate as you die.

Rarely will you be able to count on those around you to understand this profound inward turn. Be patient with them. It’s not ill will; they’re just uninformed. An invitation for a loved one to embrace you can go a long way to calm both of you at this time.

programed-to-die

Food and Nutrition

Food is fuel. You eat to live. As your body prepares to die, it needs less and less fuel. It is perfectly natural that your consumption of food will decrease and eventually stop. This is another very difficult concept for those who survive you to grasp. They will want you to eat, reasoning that eating will help you maintain your strength. You will need to help them understand that it is not food that will nourish you for what lies ahead, it is peace and serenity.

You will no doubt experience changes in your eating habits. Cravings will come and go. On some days nothing will taste good. On other days you may prefer liquids to solids. You will most likely eliminate hard-to-digest foods, like meat, from your diet first. Other foods will follow. And in time you will even choose to refuse soft foods.
It is okay not to eat. Eating just to please someone else will actually be counterproductive for you.

Look for Part 2 later in the week.

Hump Day Humor – 10/15/14

Humor takes the sting away; it humanizes us; it helps us keep our perspective. Humor enriches us; it educates us; it brings us joy. Humor doesn’t dissolve the pain or make our life any less poignant, but it does help make things more bearable. That’s my philosophy, and I’m happy to share it with you on a weekly basis. I hope that if you enjoy what you see, you will take the opportunity to share it with others.

the funeral director

The secret life of death

the way he was

this way but once

Terminally Ill 29-Year-Old Woman: Why I’m Choosing to Die on My Own Terms

BY NICOLE WEISENSEE EGAN

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Brittany Maynard with her Great Dane, Charlie

For the past 29 years, Brittany Maynard has lived a fearless life – running half marathons, traveling through Southeast Asia for a year and even climbing Mount Kilimanjaro.

So, it’s no surprise she is facing her death the same way.

On Monday, Maynard will launch an online video campaign with the nonprofit Compassion & Choices, an end-of-life choice advocacy organization, to fight for expanding death-with-dignity laws nationwide.

And on Nov. 1, Maynard, who in April was given six months to live, intends to end her own life with medication prescribed to her by her doctor – and she wants to make it clear it is NOT suicide.

“There is not a cell in my body that is suicidal or that wants to die,” she tells PEOPLE in an exclusive interview. “I want to live. I wish there was a cure for my disease but there’s not.”

Maynard has a stage 4 glioblastoma, a malignant brain tumor.

“My glioblastoma is going to kill me, and that’s out of my control,” she says. “I’ve discussed with many experts how I would die from it, and it’s a terrible, terrible way to die. Being able to choose to go with dignity is less terrifying.”

The campaign’s six-minute video includes interviews with Brittany as well as her mother, Debbie Ziegler, and husband, Dan Diaz, 42.

“My entire family has gone through a cycle of devastation,” she says. “I’m an only child – this is going to make tears come to my eyes. For my mother, it’s really difficult, and for my husband as well, but they’ve all supported me because they’ve stood in hospital rooms and heard what would happen to me.”

Maynard was a newlywed when she started having debilitating headaches last January. That’s when she learned she had brain cancer.

“My husband and I were actively trying for a family, which is heartbreaking for us,” she says in the video.

Three months later, after undergoing surgery, she found out the tumor had grown even larger and was told she had, at best, six months to live.

After researching all her options after her diagnosis, Maynard, who was living in San Francisco at the time, decided aid in dying was her best option.

Her entire family moved with her to Portland earlier this year so she could have access to Oregon’s Death with Dignity Act, which has been in place since late 1997. Since then, 1,173 people have had prescriptions written under the act, and 752 have used them to die.

Terminally Ill 29-Year-Old Woman: Why I'm Choosing to Die on My Own Terms| Health, Real People Stories

Brittany Maynard and husband Dan Diaz

Four other states – Washington, Montana, Vermont and New Mexico – have authorized aid in dying. Compassion & Choices has campaigns in place in California, Colorado, Connecticut, Massachusetts and New Jersey.

In mid-October, Maynard will videotape testimony to be played for California lawmakers and voters at the appropriate time.

“Right now it’s a choice that’s only available to some Americans, which is really unethical,” she says.

“The amount of sacrifice and change my family had to go through in order to get me to legal access to death with dignity – changing our residency, establishing a team of doctors, having a place to live – was profound,” she says.

“There’s tons of Americans who don’t have time or the ability or finances,” she says, “and I don’t think that’s right or fair.”

This is why she’s using the precious time she has left to advocate for everyone to have the same choice she does.

“I believe this choice is ethical, and what makes it ethical is it is a choice,” she says. “The patient can change their mind right up to the last minute. I feel very protected here in Oregon.”

But Maynard doesn’t think she will change her mind. The date she picked was carefully chosen.

“I really wanted to celebrate my husband’s birthday, which is October 30,” she says. “I’m getting sicker, dealing with more pain and seizures and difficulties so I just selected it.”

Maynard says her exhaustion has “increased a lot” recently.

“I still get out and take a walk with my family everyday,” she says. “I try not to hold onto the dogs anymore because the past few weeks I’ve fallen a few times.”

Her pain has increased, too, but so far she’s been managing it with medications from her doctors.

“I was in the hospital two weeks ago after two seizures,” she says. “Immediately after, I lost my ability to speak for a few hours. So it’s scary, very frightening.”

Which is why she knows she’s making the right decision.

When Maynard passes on Nov. 1, she will do so in the bedroom she shares with her husband. By her side will be her mother, stepfather, husband and best friend (who is also a physician).

“I’m dying, but I’m choosing to suffer less,” she says, “to put myself through less physical and emotional pain and my family as well.”

Complete Article HERE!

‘Art of Death’ events focus on end-of-life issues

BY MARGARET BIKMAN

Ashley Benem, 45, is a practicing death midwife in Whatcom County who comes from a long history of healing work. She has worked on an ambulance off and on for 17 years, has been a practicing licensed massage therapist for 14 years and has been a counselor and minister the last five years.death-cab-for-cutie-transatlanticism-reissue

She also has worked intensely as an advocate for birthing women as a birth doula and pregnancy specialist in bodywork for years. That passion for being a support during a major transition, she says, has lead her to work with the dying.

On Thursday, Oct. 2, “The Art of Death: Shifting the Way We Look at Death,” a multifaceted event that includes films, workshops, music, performances and exhibits, kicks off at 5 p.m. at Pickford Film Center, 1318 Bay St.

The idea came to Benem when she saw what she says was a powerful art installation by Scott Kolbo at a gallery in Anacortes. The piece is the featured piece for “The Art of Death” exhibit at The Majestic on North Forest Street, with events planned around the exhibit for Oct. 10 and 11.

Benem says she thought if people could see the piece, it would start their minds thinking about their beliefs and knowledge about end-o-life issues.

“Nothing accesses our opinions, our beliefs and our emotions like the arts,” she says. “It is also the fastest way for us to begin to reconstruct our beliefs and opinions about any subject.”

So, Benem says, the thought of having an art show that focused on death and dying as a transition was born. The “little art show,” she says, grew by public demand into over a week of offerings around end-of-life choices.

Events continue through Oct. 11, and it’s all coordinated by Benem, with support from many agencies in Whatcom County, including Whatcom Alliance for Health Advancement, Northwest Regional Council, the Green Burial Council, Whatcom Hospice, Moles Farewell Tributes, Compassion & Choices, Death Cafe at the Center for Spiritual Living, The Leopold and Pickford Film Center, among others.

There will be three to four offerings a day, including a film festival of informative documentaries; presentations; and workshops covering such topics as legal preparations, grief work through poetry; how to write a death plan (much like a birth plan), and how to prepare yourself and the ones around you for the inevitable.

Benem says current practices of dying in the United States are protocol-based.

“We have taken the family and the care for the dying and dead out of our hands and have given that responsibility over to the authorities,” she says. “We have countless books, reports and studies to show us how that practice is not healthy. … Being part of our own and our loved ones’ death and dying process is truly the most natural and healing thing we can do.”

It’s her belief that if people bring a broader awareness of the options they have on end-of-life choices, they can make better, more-informed decisions.

That’s what she says she’s’ hoping for with “The Art of Death” – to bring more information to the public.

Complete Article HERE!

CA Governor Signs Respect After Death Act

(Sacramento) Today, California’s Respect After Death Act (AB 1577) was signed by Governor Brown, having passed in both the Assembly and Senate earlier this year. The long-awaited bill will provide needed guidance to help ensure that transgender people have their gender identity reflected on their death certificates. It was authored by Speaker of the Assembly Toni Atkins and co-sponsored by Equality California and Transgender Law Center.

respect after death

“We are grateful to the Governor, California’s Legislature, and the leadership of Assembly Speaker Atkins for enacting this common-sense bill that will help protect the dignity of our loved ones upon their passing,” said Masen Davis, Executive Director of Transgender Law Center. “This brings us a significant step closer to making sure that all transgender people are able to live—and die—authentically in accordance with who they really are.”

“Everyone deserves to have their identity respected in death, and this law cleans up a confusing process to ensure transgender Californians get the same respect that anyone else gets,” said Rick Zbur, executive director of EQCA. “We thank the Governor and Speaker Atkins for their leadership on this issue.”

AB 1577 requires the official responsible for completing a transgender person’s death certificate to do so in a manner that reflects the person’s gender identity if they are presented appropriate documentation, such as written instructions from the deceased person confirming their wishes, an updated birth certificate or driver’s license, or evidence of medical treatment for gender transition. In the absence of these documents, the gender reported by the person’s legal next of kin would be used.

Chris LeeDrafted at the beginning of this year, the bill drew inspiration from the passing of Christopher Lee, a San Francisco artist and transgender advocate who was misgendered after his death in 2012. The bill was passed by the Assembly Health Committee in March, and passed by the Senate in August. Transgender Law Center congratulates everyone who has helped advocate for this important step!

“I’m so happy,” said Lee’s close friend Chino Scott-Chung. “It brings us great solace to know that Christopher’s legacy will live on to protect the dignity of other transgender people, and that their friends and families will hopefully not have to endure what we did.”

Transgender Law Center works to change law, policy, and attitudes so that all people can live safely, authentically, and free from discrimination regardless of their gender identity or expression. www.transgenderlawcenter.org

Equality California (EQCA) is the largest statewide lesbian, gay, bisexual, and transgender advocacy organization in California. For more than a decade, Equality California has strategically moved California from a state with extremely limited legal protections for lesbian, gay, bisexual and transgender people to a state with some of the most comprehensive human rights protections in the nation. Equality California has partnered with legislators to successfully sponsor more than 100 pieces of pro-equality legislation. EQCA continues to advance equality through legislative advocacy, electoral work, public education and community empowerment. www.eqca.org

Complete Article HERE!

Life Is But A Dream – 09/29/14

What does “life is but a dream” mean?

Sometimes when something unbelievable happens, it’s so outrageous (usually in a good way) that it seems like you’re in a dream.

Life is what you make of it. So if you dare to dream, envision what you want it to be – it becomes your reality. It goes right along with the saying “You can be anything you want to be…”

In dreams anything is possible, impossible becomes possible. In life there are limitations with unseen forces that work along with our motives to confuse us more on the path to fulfillment. Life is but a dream – nothing is so easy as to dream it and make it happen right that moment without obstacles standing in way.

Institute of Medicine urges reforms to improve care for dying people

By Lisa M. Krieger

An influential national institute has prescribed a powerful cure for America’s approach to dying, saying that today’s health care system is ill-equipped to provide the comfort and care so cherished in our final days.

The long-awaited report released Wednesday by the Institute of Medicine recommends that regular end-of-life conversations become part of patients’ primary care, starting at age 18 and that doctors should be paid for time spent on these discussions — a controversial initiative eliminated from President Barack Obama’s health care law.

A medical bill, family photographs and belongings of Lisa Krieger’s late father Kenneth Harris Krieger.(Dai Sugano/Staff)

A medical bill, family photographs and belongings of Lisa Krieger’s late father Kenneth Harris Krieger.

The report reflects the growing concern over the dizzying array of high-tech interventions to emerge in recent years that prolong futile suffering, often at great emotional, physical and financial cost. Those interventions were the subject of this newspaper’s yearlong series “Cost of Dying.” To correct the current, misguided course, Medicare should boost coverage for home health services, not just high-tech hospital care, the report urges. And more doctors must be trained and licensed in end-of-life care, through changes in universities, state medical boards and accrediting agencies, it adds.

“Even though death is very much part of the cycle of life, thinking and talking about one’s own death usually remains in the background,” said Dr. Philip Pizzo, former dean of Stanford University’s School of Medicine and a co-chairman of the report.

“It is our hope,” said Pizzo, “that this report will lead to improvements in end-of-life care and the experience of dying for all.”

The 21-member committee, which included experts in law and medicine, devoted two years to studying federal policy, financing and hospital practices. Recommendations of the institute, a private, nonprofit arm of the National Academy of Sciences in Washington, D.C., often make their way into U.S. laws and federal agency policies.

The “Dying in America” report recommends that federal and state governments and private insurers create financial incentives for patients and clinicians to discuss end-of-life matters, document patient preferences, and provide appropriate services and care.

The report authors also suggest having initial conversations about end-of-life values, guided by a physician, at milestones of life, such as getting a driver’s license, turning 18, leaving home or marrying. Additional planning should occur for those in high-risk occupations, at the onset of chronic illness and when applying for Medicare.

“There is unnecessary and gratuitous suffering all over the place,” said Dr. BJ Miller, executive director at San Francisco’s Zen Hospice, who was not involved in the report. “But when the Institute of Medicine says something, people listen — at all levels,” said Miller, an assistant clinical professor of medicine at UCSF.

A Stanford end-of-life care expert said the report is ” relevant to persons who are seriously ill, their parents, children, extended families — which essentially means every American.”

“The timing of the report is exquisite, especially as the population of multiethnic older Americans is now exploding into a ‘silver-brown tsunami,’ ” said Dr. VJ Periyakoil, director of Palliative Care Education & Training at Stanford’s School of Medicine.

The 507-page report mirrors findings of this newspaper’s Cost of Dying series — posted at www.mercurynews.com/cost-of-dying. The series concluded with a story that prescribed ways to make end-of-life care more affordable and humane and led to community meetings throughout the Bay Area.

Data show that patients subjected to ineffective and burdensome high-tech treatments do not necessarily live a quality life longer — but instead suffer a prolonged dying. Such care is expensive and physically and emotionally hard on patients and their families.

But political controversy — and a human tendency to avoid thoughts of one’s own death — have derailed discussion of a profoundly important subject.

A 2009 provision of the Affordable Care Act to pay doctors for end-of-life counseling was labeled a “death panel” and never found its way into the law. A second attempt to authorize payment also was shelved.

The fee-for-service structure of the health care system is also to blame, the report concludes. “Perverse financial incentives” reward expensive high-tech and hospital procedures, rather than conversations, home health care and pain management.

The report was funded by a $1.5 million gift from an anonymous donor — who has also offered to fund a yearlong public education campaign.

“Most of us understand that we will die,” Miller said. “But we don’t know how to talk about it or what to do about it.”

ACTIONS

The Institute of Medicine makes five recommendations to lessen suffering at the end of life.

1. Cover comprehensive care for people with advanced serious illness nearing the end of life. 2. Develop concrete standards for doctors and patients to discuss and plan end of life care.
3. Set training, certification and license requirements to strengthen the knowledge and skills of all doctors who care for ill people nearing the end of life.
4. Integrate the financing of medical and social services to support quality care consistent with the values, goals and informed preferences of such people.
5. Widely provide fact-based information to encourage planning for the end of life and making informed choices.

Complete Article HERE!

How to help ensure you die on your own terms

By LISA ZAMOSKY

Earlier this year, Gary Spivack and his sister Betsy Goodkin lost their mother to cancer. Between her first diagnosis and her death in April, her children say, their mother was determined to overcome her illness.

Gary Spivack and his sister Betsy Goodkin

“She was a very stubborn and proud person who fought this and had a lot of support from immediate family and a lot of friends,” says Spivack, 49, a music industry executive who lives in Pacific Palisades.

“She was going to live out her final minutes as healthy and fighting it as much as she could,” adds Goodkin, 51, who describes herself as a “full-time mom” in the Cheviot Hills neighborhood of Los Angeles.

But even as their mother fought to stay alive and healthy, her children say, she made her end-of-life wishes known: If death was imminent, she wanted no heroic measures taken to save her life. And she insisted on dying at home.

They said their mother passed away April 13 in just the manner she had hoped: She was in her own bedroom with the lights low and the mood peaceful. She held hands with loved ones as she passed.

Dr. Neil Wenger, director of the UCLA Health Ethics Center, said most patients would prefer to die that way, but few actually do. That’s because they fail to put their final request in writing, he says.

Without advanced planning, he says, most people die in hospital intensive care units, “in not the most dignified circumstances, in a way most say they don’t want to die.”

Why the gap between what people say they want at the end of their lives and what actually happens? There are many reasons.

A recent study published in the American Journal of Preventive Medicine found that lack of awareness is the most common reason people cite for not having written instructions prepared in advance.

“People go into a mode of thinking — and are encouraged to — that ‘if I just apply enough technology I will survive it,'” says Barbara Coombs Lee, president of Denver group Compassion & Choices. They even continue “in that mode of thinking when it’s perfectly obvious they are actively dying.”

Doctors also avoid such talks. Some physicians incorrectly believe patients don’t want to discuss death. Others pass the buck, believing it’s some other doctor’s responsibility to have the discussion.

These talks take time and can be emotional. “Doctors are human and they bring to the table a lot of their own emotions about death and dying, and these can be very difficult conversations to have,” said Dr. Glenn Braunstein, vice president of clinical innovation at Cedars-Sinai Medical Center.

A report out last week by the Institute of Medicine stated that medical and nursing education fails to orient healthcare providers toward less aggressive forms of end-of-life care, and many providers simply lack the communication skills needed to have these conversations.

Also, the report noted, providers are still largely paid to deliver more services, rather than fewer — even when treatment is futile.

Experts offer recommendations for putting end-of-life plans in place and what needs to be considered.

Open up the lines of communication. Frequent conversations about end-of-life goals between doctors and patients are essential if unwanted treatment is to be avoided, experts say.

“When people fail to plan for the worst, often they find themselves in a struggle to avoid an imminent and inevitable death that ends up causing an enormous amount of suffering for them and for their family members,” Coombs Lee says.

“Anyone with a life-threatening disease should know their options and the efficacy rate of any treatment they are offered,” she says.

Insist on shared decision-making. End-of-life conversations should be part of shared decision-making between a patient and his or her doctor, Braunstein says.

“You take into account the patient’s preferences, their spirituality and a variety of things. At the same time the physician should be giving honest information about what the prognosis is, what we can do and what we can’t do,” he says.

Talk about comfort care: Conversations should include discussions about your various treatment options, including palliative care, which emphasizes a patient’s physical and emotional comfort. Braunstein said palliative care should start well before a patient is terminally ill.

Also important is to talk about hospice care — treatment when you are no longer attempting to prolong your life but rather focusing on staying comfortable and managing pain in your final days.

“We think of hospice care delivered in the home as the gold standard,” Coombs Lee says.

Research suggests that people who receive palliative and hospice care may live longer than ill patients who don’t.

Select an agent. It’s a good idea to name someone such as a family member or close friend to serve as your healthcare agent.

This should be the person you most trust to represent your best interests and who will make sure your wishes are respected and carried out. Your agent can’t be your doctor or other healthcare providers treating you.

Establish an advance care directive. These directives for your last days are legal documents. They allow patients to state their treatment wishes and appoint someone to make medical decisions on their behalf.

They should spell out what you want to have happen and what you don’t. They must be signed by two witnesses — not your doctor or the person you name as your healthcare agent. Alternatively, you can have the document notarized.

A copy should be given to your healthcare agent, other family members or friends, and to your doctor. Ask that it be included as part of your medical record.

Get your doctor’s orders in writing. A Physician Orders for Life-Sustaining Treatment is a frequently used document to be signed by both the physician and the patient.

It generally is filled out when a person’s anticipated life span is six months or less and is put in a prominent place where caregivers and paramedics can see it. “The document is pink so it stands out, and we tell people to put it on their refrigerator or where they’re sitting downstairs,” Braunstein says.

Goodkin of Cheviot Hills says she learned a lot from her mother’s passing in April, namely about how to die on your own terms.

“Everybody wants to die with dignity, bottom line,” she says. “Whatever that means to somebody, you just have to honor that.”

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Study finds unwanted care near death

West Palm Beach, Fla. — Americans suffer needless discomfort and undergo unwanted and costly care as they die, in part because of a medical system ruled by “perverse incentives” for aggressive care and not enough conversation about what people want, according to a report released Wednesday.

palliativecareAlthough people repeatedly stress a desire to die at home, free from pain, the opposite often happens, the Institute of Medicine found in its “Dying in America” report. Most people do not document their wishes on end-of-life care and even those who do face a medical system poorly suited to give them the death they want, the authors found.

The result is breathing and feeding tubes, powerful drugs and other treatment that often fails to extend life and can make the final days more unpleasant. The report blamed a fee-for-service medical system in which “perverse incentives” exist for doctors and hospitals to choose the most aggressive care, inadequate training for those caring for the dying, and physicians who default to lifesaving treatment because they worry about liability.

Recommendations of the institute, a private nonprofit arm of the National Academy of Sciences, often make their way into U.S. laws and federal agency policies.

“It’s not an intentional thing. It’s a systemic problem,” said David Walker, the former U.S. comptroller general, who co-chaired the committee of 21 experts that issued the 500-page report.Palliative-Care

Advance directives including living wills have been unpopular and ineffective, the report says. It urges repeated conversations about patients’ wishes beginning far earlier than many would think — perhaps as teenagers — and continuing the talks throughout life.

“The fee-for-service model, the lack of coordination between medical and social services, the challenges that individuals face in finding a provider who’s willing and knowledgeable to speak with them about death and dying all conspire against them coming up with the right individual plan,” said Philip Pizzo, a doctor who was co-chair with Walker.

Pizzo wrote: “Even though death is very much part of the cycle of life, thinking and talking about one’s own death usually remains in the background. It is our hope that this report will lead to improvements in end-of-life care and the experience of dying for all.”

Palliative care praised

The report praised programs in palliative care, which focuses on treating pain, minimizing side effects, coordinating care among doctors and ensuring that concerns of patients and their families are addressed. This type of care has expanded rapidly in the past several decades and is now found in a majority of U.S. hospitals, but the report says many physicians have no training in it.

Palliative-Care2“This report is relevant to persons who are seriously ill, their parents, children, extended families which essentially means every American,” said VJ Periyakoil, director of Palliative Care Education and Training at Stanford University’s School of Medicine, who was not involved in the report.

In many ways, the report is a repudiation of the controversy created by the term “death panel” in response to President Barack Obama’s health care law. The claim centered on the government saving money by deciding who would live and who would die. The controversial proposal never found its way into the law, the 2010 Affordable Care Act.

In fact, the report says the very type of end-of-life care Americans say they want would shrink medical bills and reduce the governmental burden.

“They will have a higher quality of life, and it’s very likely to be less expensive,” said Rep. Earl Blumenauer (D-Ore.), a frequent voice on end-of-life issues who reviewed the report. “But the main key here is that we should be giving people what they want.”

Blumenauer has sponsored a bill to allow Medicare to pay doctors for having end-of-life conversations with patients. That is the very idea that set off the “death panel” fury, which generated the most widespread and high-profile conversations on end-of-life care in the United States since the case of Terri Schiavo, a brain-damaged Florida woman who became the center of a protracted court fight over having her feeding tube removed.

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