Re: A New Look at Living Wills (WSJ, 6/8/12)

June 9, 2012

Thank you! I will go over my living wills and health care proxy and see if

I need some changes. Vivian

On Fri, Jun 8, 2012 at 7:27 PM, Robin Riddle wrote:

> **

>

> There's a good article in today's Wall Street

> Journal on living wills. Here are key excerpts:

>

> " An estimated 25% to 30% of Americans have filled

> out living wills, documents that spell out wishes

> for medical treatment. But ethicists say the

> typically simplistic documents aren't the

> solution many hoped they would be.

> Life-prolonging medical technology has far

> outstripped doctors' ability to predict outcomes.

> The hardest choices center on when quality of

> life will be so diminished that death is

> preferable. As such, some health organizations

> are trying to improve living wills, allowing for

> more flexibility and nuance. Some ethicists,

> meanwhile, are de-emphasizing living wills

> altogether and focusing on appointing a trusted

> family member or friend as your health-care

> agent. ... The problem with living wills is that

> most people can't articulate what they want...

> And even if they can, family members often don't

> properly interpret those wishes. "

>

> I think this reinforces the idea that we need to

> choose carefully a family member or friend who

> will be our health-care agent, and we need to

> have a lengthy discussion with that person in

> advance about what " quality of life " means to us.

>

> The article mentions two sources of living will documents:

> * Five Wishes: fivewishes.org; $5; can be completed online

> * Lifecare Directives: lifecaredirectives.com/products.html#ead; cost is

> $8

>

> Another resource mentioned in the article is the

> American Bar Association's " Consumer's Tool Kit

> for Health Care Advance Planning, " described as a

> tool for getting the conversation started. The

> tool kit is available at no charge online:

>

http://www.americanbar.org/groups/law_aging/resources/consumer_s_toolkit_for_hea\

lth_care_advance_planning.html

>

> Robin

>

> http://online.wsj.com/article/SB10001424052702303990604577369920659306562.html

>

> Wall Street Journal

> June 8, 2012, 9:26 a.m. ET

> STAYING FIT

> A New Look at Living Wills

> These critical documents about your preferences

> for end-of-life care don't always work as

> planned. More flexibility might be the answer.

> By Johannes

>

> My father was in a coma, hooked up to a

> ventilator, and I had to make a tough call.

>

> His living will expressed his desires for a few

> black-and-white situations: He didn't want to be

> kept alive if he was terminally ill, or in an

> irreversible vegetative state. But the situation

> I faced wasn't so simple. The neurologist said he

> would wake up from the coma, but there was a good

> chance he would have severe brain damage. How

> much of a chance? The doctors couldn't say.

>

> Doctors and nurses say my heart-wrenching

> experience is typical of the complexity of

> real-life bedside decisions. An estimated 25% to

> 30% of Americans have filled out living wills,

> documents that spell out wishes for medical

> treatment. But ethicists say the typically

> simplistic documents aren't the solution many

> hoped they would be. Life-prolonging medical

> technology has far outstripped doctors' ability

> to predict outcomes. The hardest choices center

> on when quality of life will be so diminished that death is preferable.

>

> As such, some health organizations are trying to

> improve living wills, allowing for more

> flexibility and nuance. Some ethicists,

> meanwhile, are de-emphasizing living wills

> altogether and focusing on appointing a trusted

> family member or friend as your health-care agent.

>

> " Most of us have come to the conclusion that the

> way to get over the vagueness is to get someone

> to speak for you, " says M. Veatch, a

> professor of medical ethics at town

> University's Kennedy Institute of Ethics in Washington, D.C.

>

> Living wills were created in the 1960s and gained

> national attention in the 1970s when a young

> woman, Ann Quinlan, following alcohol and

> drug use at a party, was left in a vegetative

> state, raising alarms about medical technology

> keeping people alive in hopeless circumstances.

>

> " We had a naive view that if you had a document,

> that would solve the problem, " says

> Callahan, co-founder and president emeritus of

> the Hastings Center, a Garrison, N.Y., nonprofit

> that was an early champion of living wills. " In

> practice, " he says, " all sorts of problems arise "

> that aren't spelled out in the documents.

>

> When Shalline, an active 86-year-old who

> regularly bested his grandchildren at ping pong,

> was unable to communicate after a severe stroke

> in March, treatment decisions fell to his

> daughter, Robin. Ms. Shalline, a 57-year-old

> teacher from Monkton, Vt., says her father had a

> living will but had never talked to her about his

> wishes. " There is so much gray area, " she says.

> " You'd hope the living will would spell it all out, but it doesn't. "

>

> His living will called for withdrawing life

> support if there was no reasonable expectation of

> regaining a " meaningful quality of life " but

> didn't describe what that meant, she says. Ms.

> Shalline, when told by doctors that her father

> could be blind in one eye, unable to feed himself

> and might never walk again, made the decision to

> withdraw the ventilator based on " what I knew

> about his life. " Mr. Shalline, who loved Wiffle

> ball and had recently helped build a staircase,

> was " proud of his 'physicalness,' " she says. He died March 18.

>

> It is hard enough, under the best of

> circumstances, to know what your family member

> would want in a particular situation. But add to

> that the fact that even top doctors can't predict outcomes very well.

>

> Lee H. Schwamm, vice chairman of the neurology

> department at Massachusetts General Hospital in

> Boston, where Mr. Shalline was treated, says that

> even when he thinks he can predict a patient's

> outcome after a stroke, he is wrong 15% to 20% of

> the time on major outcome measures, such as

> whether a patient will be able to walk again.

> " I've never seen a living will—and I've seen a

> lot—that speaks to this question of diagnostic uncertainty, " says Dr.

> Schwamm.

>

> Living Documents

> You can get a living will from a lawyer or

> download it from the Internet. Many focus on

> permanent comas and clearly hopeless conditions.

> Florida's statute-suggested living will, for

> example, directs life-prolonging treatments to be

> stopped if there is " no reasonable medical

> probability " of recovery from a terminal

> condition or persistent vegetative state.

> Florida, like most states, allows you to write

> your own living will; a few states, such as New

> Hampshire, specify that living wills must use a

> state-approved form. (A bill now being considered

> in New Hampshire would make the state form optional.)

>

> A number of efforts have been made to improve on

> the standard-style living will. A document

> available online from Lifecare Directives LLC,

> Las Vegas, for example, spells out several levels

> of cognitive decline from coma to mental

> " confusion " that require 24-hour supervision, and

> asks if you would want life support if your brain

> failed that much. The document also gives you an

> option to say whether you want doctors to be

> " positively certain, " " certain to a high degree "

> or " reasonably certain " that you will never recover before pulling the

> plug.

>

> A simpler but also innovative approach is the

> popular Five Wishes living will. Five Wishes is

> written at a sixth- to seventh-grade level, says

> Malley, president of Aging with Dignity, a

> nonprofit that distributes the document. Despite

> its simplicity, the Five Wishes living will

> addresses issues many others don't—for example,

> asking if you want pain medication to relieve

> suffering even if it makes you sleepy. It also

> has a blank space where people can specify a

> state in which they wouldn't want to be kept alive.

>

> " Some people have a phrase that pops out in their

> mind: 'If I'm in the same condition as Aunt

> ,' " Mr. Malley says. Originally written in

> 1987, the Five Wishes will has been available

> online in an interactive format since last year.

>

> Open to Interpretation

> The problem with living wills is that most people

> can't articulate what they want, says ethicist

> Fagerlin, co-director of the University of

> Michigan-affiliated Center for Bioethics and

> Social Sciences in Medicine in Ann Arbor. And

> even if they can, family members often don't properly interpret those

> wishes.

>

> In a 400-patient study published in 2001, Dr.

> Fagerlin and colleagues found that family members

> who were presented with nine hypothetical

> scenarios correctly predicted patient wishes

> about 70% of the time, whether or not the patient had filled out a living

> will.

>

> Can you forgo such documents completely? Mr.

> Callahan, who championed living wills in their

> early days, says he doesn't have one, preferring

> instead to give decision-making power to his

> wife, to whom he has said simply, " When in doubt, don't treat. "

>

> A health-care agent—a trusted family member, for

> instance—could supplant the need for a living

> will. Under the legal doctrine of " substituted

> judgment, " health-care agents must try to make

> the decision you would if you could, says Alan

> Meisel, the director of the Center for Bioethics

> and Health Law at the University of Pittsburgh.

> Anything—a phone conversation, a list of

> instructions or a formal living will—can be used

> as evidence of your wishes, he adds.

>

> As for my father, we postponed the decision, and

> he woke up, sharp as a tack, able to make his own decisions.

>

> Miss Johannes is a writer in Boston. She can be reached at next@....

>

> Future Wishes

>

> If you're considering drafting a living will and

> addressing possible end-of-life issues:

>

> * Don't rely primarily on a living will to

> communicate your wishes. Appoint a health-care agent.

>

> * Recognize that living wills available online

> typically are vague. One alternative that allows

> you to customize the document: Five Wishes

> living will, at agingwithdignity.org.

>

> * Discuss your living will with your doctor, who

> can address general questions as well as specific issues tied to your

> health.

>

> * Talk to your family and your health-care agent

> about your wishes. Conversation-starting tools

> are available in the " Consumer's Tool Kit for

> Health Care Advance Planning " at americanbar.org.

>

June 10, 2012

I am so glad to see this discussion of advance directives.

My husband and I had living wills and healthcare proxies drawn up just after he

was diagnosed with LBD, while he was still able to communicate his wishes

clearly. Now, four and a half years later, Larry is in a nursing home. I am

learning that, in addition to the complex issues raised in this forum, the

nursing home may--and in our case, does--place obstacles in the path of the

healthcare agent trying conscientiously to implement the patient's wishes as she

understands them.

The short version of this cautionary tale is this: I naively believed that

Larry's healthcare proxy, once invoked, would be placed in his chart and that my

role as his agent would be honored in every aspect of his care. But no.

The long version: A couple of months ago, I protested a care decision made

without consulting me. It took six weeks and, finally, a strongly-worded memo to

get the attention of the director of nurses. She hastily called a meeting to

discuss the memo, at which it became clear that various staff members (nurses,

dietician, nurse practitioner) routinely write orders that are rubber stamped by

the primary care physician assigned to Larry, without any attempt to contact me.

In addition, the healthcare proxy is buried in the back of his

telephone-book-size chart, while an in-house form appears near the front--a form

presented to me on the day Larry was admitted, among nearly two dozen others

that I signed in the heart-wrenching daze of consigning my husband to life away

from home. The form was billed as a DNR order, but turns out to contain versions

of other care decisions that might (and, in fact, do) appear in the healthcare

proxy.

The form is confused and poorly written and calls for decisions I believe cannot

be contemplated by a global instruction, but need to be made on a case-by-case

basis as time goes on. (For example, near the end of life, I believe Larry would

not wish to be given antibiotics to cure an otherwise life-threatening

infection; right now, however, I believe he would want antibiotics to relieve

the discomfort of a urinary tract infection.)

The healthcare proxy should and does supersede the canned language of the

form--but the nursing home staff have been taught to rely on the form. So I

spent a great deal of time creating a version of the form that reflects Larry's

wishes and my directions about how to implement them. I literally cut and

pasted, the old-fashioned way, so that the staff would recognize it as

equivalent to the form they are used to.

I presented my version to the director of nurses at the quarterly care plan

meeting mandated by the state. She immediately rejected it as as " inappropriate "

for discussion at the meeting and insisted on the approval of the primary care

doctor before it could be placed in Larry's chart. (This is a doctor who has

consistently been unavailable to meet with me over the nine months since he was

admitted to the nursing home.) The nursing director finally, grudgingly,

accepted my form for perusal by the doctor, but showed no sense of urgency about

resolving the issue.

After the meeting, I sought out the social worker, who had been present at the

care plan meeting and immediately grasped what I was trying to accomplish. She

seemed mystified by the nursing director's reaction and promised to resolve the

issue. At 9:30 the next morning, the social worker called to let me know that

the doctor had approved the form and it was now in Larry's chart.

I came away from this experience with several reaffirmations and resolutions:

My husband may be in a nursing home, but I remain his primary caregiver.

My daily presence at the nursing home and excellent rapport with the nurses who

provide outstanding hands-on care are not, by themselves, sufficient to insure

that Larry's wishes as I understand them will be carried out.

Ongoing advocacy, occasional perusal of Larry's chart, and daily check-ins with

the charge nurses are still the best means available to keep tabs on his care.

It might be a good idea to seek out the local nursing home ombudsman, whose

contact information is posted as required by the state, if only to get a better

idea of Larry's rights.

It might also be worth sharing my experience with other family members I have

met during my daily visits and learning what they may have to share in return. I

have already spoken with one wife, who went home and reviewed the forms she had

completed on her husband's behalf and feels more prepared than before to act on

his wishes.

Nursing home management and some staff find it easier to do their jobs with

minimal interference from family members. It takes perseverance and grit, and

lots of time and emotional energy, to make sure your family member's wishes are

respected and that they get the best possible care.

If your disabled family member is still capable enough, encourage them to draw

up a legal advance healthcare directive naming a healthcare agent. Discuss it

with them fully to obtain the best possible understanding of their wishes.

If you don't have an advance directive of your own, make one. Now.

Lois

ps.com, Vivian DeWalt wrote:

>

> Thank you! I will go over my living wills and health care proxy and see if

> I need some changes. Vivian

>

June 11, 2012

I completely agree with the need to have a medical directive, as well as

POA and a Will. But it is also important for people to know that *these

are expressions of your wishes*, not legally binding documents. The only

way to make this kind of arrangement binding is in a court of law, and your

attorney's office is not a court of law - just a law office. A judge needs

to bless this arrangement and that arrangement is shied away from - it's

called guardianship.

Emergency rooms and paramedics ignore medical directives. They assume

that, if you called 911 or went to the ER, you want life prolonged no

matter what. If you find an ER that will honor a medical directive, you

are profoundly lucky. Paramedics are bound to save lives and will do so

regardless of any document you might provide. There is a way around it.

Some counties allow you to file a DNR with the county. Then the

paramedics, if technology is with them, know of the DNR before they arrive

and will usually work with it.

The VA is notorious for ignoring POA. They want you to use the VFW or

American Legion to represent you - even if they had no earlier affiliation

with you or the care recipient. If you are lucky, you will have a VA

representative in your county offices. Let that representative help you.

(This applies in the U.S. I don't know if things are similar in other

countries.)

Kate

On Fri, Jun 8, 2012 at 6:27 PM, Robin Riddle wrote:

> **

>

> There's a good article in today's Wall Street

> Journal on living wills. Here are key excerpts:

>

> " An estimated 25% to 30% of Americans have filled

> out living wills, documents that spell out wishes

> for medical treatment. But ethicists say the

> typically simplistic documents aren't the

> solution many hoped they would be.

> Life-prolonging medical technology has far

> outstripped doctors' ability to predict outcomes.

> The hardest choices center on when quality of

> life will be so diminished that death is

> preferable. As such, some health organizations

> are trying to improve living wills, allowing for

> more flexibility and nuance. Some ethicists,

> meanwhile, are de-emphasizing living wills

> altogether and focusing on appointing a trusted

> family member or friend as your health-care

> agent. ... The problem with living wills is that

> most people can't articulate what they want...

> And even if they can, family members often don't

> properly interpret those wishes. "

>

> I think this reinforces the idea that we need to

> choose carefully a family member or friend who

> will be our health-care agent, and we need to

> have a lengthy discussion with that person in

> advance about what " quality of life " means to us.

>

> The article mentions two sources of living will documents:

> * Five Wishes: fivewishes.org; $5; can be completed online

> * Lifecare Directives: lifecaredirectives.com/products.html#ead; cost is

> $8

>

> Another resource mentioned in the article is the

> American Bar Association's " Consumer's Tool Kit

> for Health Care Advance Planning, " described as a

> tool for getting the conversation started. The

> tool kit is available at no charge online:

>

http://www.americanbar.org/groups/law_aging/resources/consumer_s_toolkit_for_hea\

lth_care_advance_planning.html

>

> Robin

>

> http://online.wsj.com/article/SB10001424052702303990604577369920659306562.html

>

> Wall Street Journal

> June 8, 2012, 9:26 a.m. ET

> STAYING FIT

> A New Look at Living Wills

> These critical documents about your preferences

> for end-of-life care don't always work as

> planned. More flexibility might be the answer.

> By Johannes

>

> My father was in a coma, hooked up to a

> ventilator, and I had to make a tough call.

>

> His living will expressed his desires for a few

> black-and-white situations: He didn't want to be

> kept alive if he was terminally ill, or in an

> irreversible vegetative state. But the situation

> I faced wasn't so simple. The neurologist said he

> would wake up from the coma, but there was a good

> chance he would have severe brain damage. How

> much of a chance? The doctors couldn't say.

>

> Doctors and nurses say my heart-wrenching

> experience is typical of the complexity of

> real-life bedside decisions. An estimated 25% to

> 30% of Americans have filled out living wills,

> documents that spell out wishes for medical

> treatment. But ethicists say the typically

> simplistic documents aren't the solution many

> hoped they would be. Life-prolonging medical

> technology has far outstripped doctors' ability

> to predict outcomes. The hardest choices center

> on when quality of life will be so diminished that death is preferable.

>

> As such, some health organizations are trying to

> improve living wills, allowing for more

> flexibility and nuance. Some ethicists,

> meanwhile, are de-emphasizing living wills

> altogether and focusing on appointing a trusted

> family member or friend as your health-care agent.

>

> " Most of us have come to the conclusion that the

> way to get over the vagueness is to get someone

> to speak for you, " says M. Veatch, a

> professor of medical ethics at town

> University's Kennedy Institute of Ethics in Washington, D.C.

>

> Living wills were created in the 1960s and gained

> national attention in the 1970s when a young

> woman, Ann Quinlan, following alcohol and

> drug use at a party, was left in a vegetative

> state, raising alarms about medical technology

> keeping people alive in hopeless circumstances.

>

> " We had a naive view that if you had a document,

> that would solve the problem, " says

> Callahan, co-founder and president emeritus of

> the Hastings Center, a Garrison, N.Y., nonprofit

> that was an early champion of living wills. " In

> practice, " he says, " all sorts of problems arise "

> that aren't spelled out in the documents.

>

> When Shalline, an active 86-year-old who

> regularly bested his grandchildren at ping pong,

> was unable to communicate after a severe stroke

> in March, treatment decisions fell to his

> daughter, Robin. Ms. Shalline, a 57-year-old

> teacher from Monkton, Vt., says her father had a

> living will but had never talked to her about his

> wishes. " There is so much gray area, " she says.

> " You'd hope the living will would spell it all out, but it doesn't. "

>

> His living will called for withdrawing life

> support if there was no reasonable expectation of

> regaining a " meaningful quality of life " but

> didn't describe what that meant, she says. Ms.

> Shalline, when told by doctors that her father

> could be blind in one eye, unable to feed himself

> and might never walk again, made the decision to

> withdraw the ventilator based on " what I knew

> about his life. " Mr. Shalline, who loved Wiffle

> ball and had recently helped build a staircase,

> was " proud of his 'physicalness,' " she says. He died March 18.

>

> It is hard enough, under the best of

> circumstances, to know what your family member

> would want in a particular situation. But add to

> that the fact that even top doctors can't predict outcomes very well.

>

> Lee H. Schwamm, vice chairman of the neurology

> department at Massachusetts General Hospital in

> Boston, where Mr. Shalline was treated, says that

> even when he thinks he can predict a patient's

> outcome after a stroke, he is wrong 15% to 20% of

> the time on major outcome measures, such as

> whether a patient will be able to walk again.

> " I've never seen a living will—and I've seen a

> lot—that speaks to this question of diagnostic uncertainty, " says Dr.

> Schwamm.

>

> Living Documents

> You can get a living will from a lawyer or

> download it from the Internet. Many focus on

> permanent comas and clearly hopeless conditions.

> Florida's statute-suggested living will, for

> example, directs life-prolonging treatments to be

> stopped if there is " no reasonable medical

> probability " of recovery from a terminal

> condition or persistent vegetative state.

> Florida, like most states, allows you to write

> your own living will; a few states, such as New

> Hampshire, specify that living wills must use a

> state-approved form. (A bill now being considered

> in New Hampshire would make the state form optional.)

>

> A number of efforts have been made to improve on

> the standard-style living will. A document

> available online from Lifecare Directives LLC,

> Las Vegas, for example, spells out several levels

> of cognitive decline from coma to mental

> " confusion " that require 24-hour supervision, and

> asks if you would want life support if your brain

> failed that much. The document also gives you an

> option to say whether you want doctors to be

> " positively certain, " " certain to a high degree "

> or " reasonably certain " that you will never recover before pulling the

> plug.

>

> A simpler but also innovative approach is the

> popular Five Wishes living will. Five Wishes is

> written at a sixth- to seventh-grade level, says

> Malley, president of Aging with Dignity, a

> nonprofit that distributes the document. Despite

> its simplicity, the Five Wishes living will

> addresses issues many others don't—for example,

> asking if you want pain medication to relieve

> suffering even if it makes you sleepy. It also

> has a blank space where people can specify a

> state in which they wouldn't want to be kept alive.

>

> " Some people have a phrase that pops out in their

> mind: 'If I'm in the same condition as Aunt

> ,' " Mr. Malley says. Originally written in

> 1987, the Five Wishes will has been available

> online in an interactive format since last year.

>

> Open to Interpretation

> The problem with living wills is that most people

> can't articulate what they want, says ethicist

> Fagerlin, co-director of the University of

> Michigan-affiliated Center for Bioethics and

> Social Sciences in Medicine in Ann Arbor. And

> even if they can, family members often don't properly interpret those

> wishes.

>

> In a 400-patient study published in 2001, Dr.

> Fagerlin and colleagues found that family members

> who were presented with nine hypothetical

> scenarios correctly predicted patient wishes

> about 70% of the time, whether or not the patient had filled out a living

> will.

>

> Can you forgo such documents completely? Mr.

> Callahan, who championed living wills in their

> early days, says he doesn't have one, preferring

> instead to give decision-making power to his

> wife, to whom he has said simply, " When in doubt, don't treat. "

>

> A health-care agent—a trusted family member, for

> instance—could supplant the need for a living

> will. Under the legal doctrine of " substituted

> judgment, " health-care agents must try to make

> the decision you would if you could, says Alan

> Meisel, the director of the Center for Bioethics

> and Health Law at the University of Pittsburgh.

> Anything—a phone conversation, a list of

> instructions or a formal living will—can be used

> as evidence of your wishes, he adds.

>

> As for my father, we postponed the decision, and

> he woke up, sharp as a tack, able to make his own decisions.

>

> Miss Johannes is a writer in Boston. She can be reached at next@....

>

> Future Wishes

>

> If you're considering drafting a living will and

> addressing possible end-of-life issues:

>

> * Don't rely primarily on a living will to

> communicate your wishes. Appoint a health-care agent.

>

> * Recognize that living wills available online

> typically are vague. One alternative that allows

> you to customize the document: Five Wishes

> living will, at agingwithdignity.org.

>

> * Discuss your living will with your doctor, who

> can address general questions as well as specific issues tied to your

> health.

>

> * Talk to your family and your health-care agent

> about your wishes. Conversation-starting tools

> are available in the " Consumer's Tool Kit for

> Health Care Advance Planning " at americanbar.org.

>

--

Kate Knapp

UMN - OIT

*

" What's past is prologue. " The Tempest, W.S.*

June 11, 2012

I completely agree with the need to have a medical directive, as well as

POA and a Will. But it is also important for people to know that *these

are expressions of your wishes*, not legally binding documents. The only

way to make this kind of arrangement binding is in a court of law, and your

attorney's office is not a court of law - just a law office. A judge needs

to bless this arrangement and that arrangement is shied away from - it's

called guardianship.

Emergency rooms and paramedics ignore medical directives. They assume

that, if you called 911 or went to the ER, you want life prolonged no

matter what. If you find an ER that will honor a medical directive, you

are profoundly lucky. Paramedics are bound to save lives and will do so

regardless of any document you might provide. There is a way around it.

Some counties allow you to file a DNR with the county. Then the

paramedics, if technology is with them, know of the DNR before they arrive

and will usually work with it.

The VA is notorious for ignoring POA. They want you to use the VFW or

American Legion to represent you - even if they had no earlier affiliation

with you or the care recipient. If you are lucky, you will have a VA

representative in your county offices. Let that representative help you.

(This applies in the U.S. I don't know if things are similar in other

countries.)

Kate

On Fri, Jun 8, 2012 at 6:27 PM, Robin Riddle wrote:

> **

>

> There's a good article in today's Wall Street

> Journal on living wills. Here are key excerpts:

>

> " An estimated 25% to 30% of Americans have filled

> out living wills, documents that spell out wishes

> for medical treatment. But ethicists say the

> typically simplistic documents aren't the

> solution many hoped they would be.

> Life-prolonging medical technology has far

> outstripped doctors' ability to predict outcomes.

> The hardest choices center on when quality of

> life will be so diminished that death is

> preferable. As such, some health organizations

> are trying to improve living wills, allowing for

> more flexibility and nuance. Some ethicists,

> meanwhile, are de-emphasizing living wills

> altogether and focusing on appointing a trusted

> family member or friend as your health-care

> agent. ... The problem with living wills is that

> most people can't articulate what they want...

> And even if they can, family members often don't

> properly interpret those wishes. "

>

> I think this reinforces the idea that we need to

> choose carefully a family member or friend who

> will be our health-care agent, and we need to

> have a lengthy discussion with that person in

> advance about what " quality of life " means to us.

>

> The article mentions two sources of living will documents:

> * Five Wishes: fivewishes.org; $5; can be completed online

> * Lifecare Directives: lifecaredirectives.com/products.html#ead; cost is

> $8

>

> Another resource mentioned in the article is the

> American Bar Association's " Consumer's Tool Kit

> for Health Care Advance Planning, " described as a

> tool for getting the conversation started. The

> tool kit is available at no charge online:

>

http://www.americanbar.org/groups/law_aging/resources/consumer_s_toolkit_for_hea\

lth_care_advance_planning.html

>

> Robin

>

> http://online.wsj.com/article/SB10001424052702303990604577369920659306562.html

>

> Wall Street Journal

> June 8, 2012, 9:26 a.m. ET

> STAYING FIT

> A New Look at Living Wills

> These critical documents about your preferences

> for end-of-life care don't always work as

> planned. More flexibility might be the answer.

> By Johannes

>

> My father was in a coma, hooked up to a

> ventilator, and I had to make a tough call.

>

> His living will expressed his desires for a few

> black-and-white situations: He didn't want to be

> kept alive if he was terminally ill, or in an

> irreversible vegetative state. But the situation

> I faced wasn't so simple. The neurologist said he

> would wake up from the coma, but there was a good

> chance he would have severe brain damage. How

> much of a chance? The doctors couldn't say.

>

> Doctors and nurses say my heart-wrenching

> experience is typical of the complexity of

> real-life bedside decisions. An estimated 25% to

> 30% of Americans have filled out living wills,

> documents that spell out wishes for medical

> treatment. But ethicists say the typically

> simplistic documents aren't the solution many

> hoped they would be. Life-prolonging medical

> technology has far outstripped doctors' ability

> to predict outcomes. The hardest choices center

> on when quality of life will be so diminished that death is preferable.

>

> As such, some health organizations are trying to

> improve living wills, allowing for more

> flexibility and nuance. Some ethicists,

> meanwhile, are de-emphasizing living wills

> altogether and focusing on appointing a trusted

> family member or friend as your health-care agent.

>

> " Most of us have come to the conclusion that the

> way to get over the vagueness is to get someone

> to speak for you, " says M. Veatch, a

> professor of medical ethics at town

> University's Kennedy Institute of Ethics in Washington, D.C.

>

> Living wills were created in the 1960s and gained

> national attention in the 1970s when a young

> woman, Ann Quinlan, following alcohol and

> drug use at a party, was left in a vegetative

> state, raising alarms about medical technology

> keeping people alive in hopeless circumstances.

>

> " We had a naive view that if you had a document,

> that would solve the problem, " says

> Callahan, co-founder and president emeritus of

> the Hastings Center, a Garrison, N.Y., nonprofit

> that was an early champion of living wills. " In

> practice, " he says, " all sorts of problems arise "

> that aren't spelled out in the documents.

>

> When Shalline, an active 86-year-old who

> regularly bested his grandchildren at ping pong,

> was unable to communicate after a severe stroke

> in March, treatment decisions fell to his

> daughter, Robin. Ms. Shalline, a 57-year-old

> teacher from Monkton, Vt., says her father had a

> living will but had never talked to her about his

> wishes. " There is so much gray area, " she says.

> " You'd hope the living will would spell it all out, but it doesn't. "

>

> His living will called for withdrawing life

> support if there was no reasonable expectation of

> regaining a " meaningful quality of life " but

> didn't describe what that meant, she says. Ms.

> Shalline, when told by doctors that her father

> could be blind in one eye, unable to feed himself

> and might never walk again, made the decision to

> withdraw the ventilator based on " what I knew

> about his life. " Mr. Shalline, who loved Wiffle

> ball and had recently helped build a staircase,

> was " proud of his 'physicalness,' " she says. He died March 18.

>

> It is hard enough, under the best of

> circumstances, to know what your family member

> would want in a particular situation. But add to

> that the fact that even top doctors can't predict outcomes very well.

>

> Lee H. Schwamm, vice chairman of the neurology

> department at Massachusetts General Hospital in

> Boston, where Mr. Shalline was treated, says that

> even when he thinks he can predict a patient's

> outcome after a stroke, he is wrong 15% to 20% of

> the time on major outcome measures, such as

> whether a patient will be able to walk again.

> " I've never seen a living will—and I've seen a

> lot—that speaks to this question of diagnostic uncertainty, " says Dr.

> Schwamm.

>

> Living Documents

> You can get a living will from a lawyer or

> download it from the Internet. Many focus on

> permanent comas and clearly hopeless conditions.

> Florida's statute-suggested living will, for

> example, directs life-prolonging treatments to be

> stopped if there is " no reasonable medical

> probability " of recovery from a terminal

> condition or persistent vegetative state.

> Florida, like most states, allows you to write

> your own living will; a few states, such as New

> Hampshire, specify that living wills must use a

> state-approved form. (A bill now being considered

> in New Hampshire would make the state form optional.)

>

> A number of efforts have been made to improve on

> the standard-style living will. A document

> available online from Lifecare Directives LLC,

> Las Vegas, for example, spells out several levels

> of cognitive decline from coma to mental

> " confusion " that require 24-hour supervision, and

> asks if you would want life support if your brain

> failed that much. The document also gives you an

> option to say whether you want doctors to be

> " positively certain, " " certain to a high degree "

> or " reasonably certain " that you will never recover before pulling the

> plug.

>

> A simpler but also innovative approach is the

> popular Five Wishes living will. Five Wishes is

> written at a sixth- to seventh-grade level, says

> Malley, president of Aging with Dignity, a

> nonprofit that distributes the document. Despite

> its simplicity, the Five Wishes living will

> addresses issues many others don't—for example,

> asking if you want pain medication to relieve

> suffering even if it makes you sleepy. It also

> has a blank space where people can specify a

> state in which they wouldn't want to be kept alive.

>

> " Some people have a phrase that pops out in their

> mind: 'If I'm in the same condition as Aunt

> ,' " Mr. Malley says. Originally written in

> 1987, the Five Wishes will has been available

> online in an interactive format since last year.

>

> Open to Interpretation

> The problem with living wills is that most people

> can't articulate what they want, says ethicist

> Fagerlin, co-director of the University of

> Michigan-affiliated Center for Bioethics and

> Social Sciences in Medicine in Ann Arbor. And

> even if they can, family members often don't properly interpret those

> wishes.

>

> In a 400-patient study published in 2001, Dr.

> Fagerlin and colleagues found that family members

> who were presented with nine hypothetical

> scenarios correctly predicted patient wishes

> about 70% of the time, whether or not the patient had filled out a living

> will.

>

> Can you forgo such documents completely? Mr.

> Callahan, who championed living wills in their

> early days, says he doesn't have one, preferring

> instead to give decision-making power to his

> wife, to whom he has said simply, " When in doubt, don't treat. "

>

> A health-care agent—a trusted family member, for

> instance—could supplant the need for a living

> will. Under the legal doctrine of " substituted

> judgment, " health-care agents must try to make

> the decision you would if you could, says Alan

> Meisel, the director of the Center for Bioethics

> and Health Law at the University of Pittsburgh.

> Anything—a phone conversation, a list of

> instructions or a formal living will—can be used

> as evidence of your wishes, he adds.

>

> As for my father, we postponed the decision, and

> he woke up, sharp as a tack, able to make his own decisions.

>

> Miss Johannes is a writer in Boston. She can be reached at next@....

>

> Future Wishes

>

> If you're considering drafting a living will and

> addressing possible end-of-life issues:

>

> * Don't rely primarily on a living will to

> communicate your wishes. Appoint a health-care agent.

>

> * Recognize that living wills available online

> typically are vague. One alternative that allows

> you to customize the document: Five Wishes

> living will, at agingwithdignity.org.

>

> * Discuss your living will with your doctor, who

> can address general questions as well as specific issues tied to your

> health.

>

> * Talk to your family and your health-care agent

> about your wishes. Conversation-starting tools

> are available in the " Consumer's Tool Kit for

> Health Care Advance Planning " at americanbar.org.

>

--

Kate Knapp

UMN - OIT

*

" What's past is prologue. " The Tempest, W.S.*

June 11, 2012

Lois brings up a very important point, one that I am wrestling with right

now. The nursing home throws a lot of documents and forms at you for you

to sign upon entry of your loved one. They insist that your LO can't be

admitted without your signature on every one of them. Be very careful of

the terms " responsible party " and " guarantor. "

According to the agreement I signed, " responsible party " applied to my

administration and use of Mom's funds for payment to the nursing home.

" Guarantor " means that the signatory agrees to cover all nursing home debt

with personal funds if your LO's funds run dry. I did not sign on the

guarantor line. The only reason they let Mom in, then, was because I

agreed to review it with our attorney and sign it upon his approval. They

could have denied Mom a place but I knew that I couldn't sign this. Then I

forgot about it. Now that Mom has passed, they are coming to me for

another $900.00. I am holding firm that they are only entitled to funds

from Mom's accounts and, according to MN Statue 524.805 (I have it

memorized now) they are fifth in the order of claims met and, since we

didn't even make it to #2, they should go ahead and recognize their loss.

My point is that you should have someone with you to review anything you

are asked to sign. Someone who is removed enough from the emotion of the

situation to be able to see what your signature on each document really

means. I know it seems like you have no choice, like your LO will be

denied care if you don't sign everything. But if they don't give you time

for a rational decision and insist you sign a lot of documents and forms

immediately, that is an indication of how they will behave when push comes

to shove. If you can possibly get them to provide you with a copy of

everything they will ask you to sign before you have to sign, take them

home or to your attorney for review. The best time for this would be when

you are looking at nursing homes and getting on waiting lists. On the day

of admission, the nursing home has a totally unfair advantage. So I see

nothing wrong in using whatever you need to to avoid signing something that

you can't live with.

Kate

On Sun, Jun 10, 2012 at 10:34 PM, gramma_lo_in_boston wrote:

> **

>

> I am so glad to see this discussion of advance directives.

>

> My husband and I had living wills and healthcare proxies drawn up just

> after he was diagnosed with LBD, while he was still able to communicate his

> wishes clearly. Now, four and a half years later, Larry is in a nursing

> home. I am learning that, in addition to the complex issues raised in this

> forum, the nursing home may--and in our case, does--place obstacles in the

> path of the healthcare agent trying conscientiously to implement the

> patient's wishes as she understands them.

>

> The short version of this cautionary tale is this: I naively believed that

> Larry's healthcare proxy, once invoked, would be placed in his chart and

> that my role as his agent would be honored in every aspect of his care. But

> no.

>

> The long version: A couple of months ago, I protested a care decision made

> without consulting me. It took six weeks and, finally, a strongly-worded

> memo to get the attention of the director of nurses. She hastily called a

> meeting to discuss the memo, at which it became clear that various staff

> members (nurses, dietician, nurse practitioner) routinely write orders that

> are rubber stamped by the primary care physician assigned to Larry, without

> any attempt to contact me.

>

> In addition, the healthcare proxy is buried in the back of his

> telephone-book-size chart, while an in-house form appears near the front--a

> form presented to me on the day Larry was admitted, among nearly two dozen

> others that I signed in the heart-wrenching daze of consigning my husband

> to life away from home. The form was billed as a DNR order, but turns out

> to contain versions of other care decisions that might (and, in fact, do)

> appear in the healthcare proxy.

>

> The form is confused and poorly written and calls for decisions I believe

> cannot be contemplated by a global instruction, but need to be made on a

> case-by-case basis as time goes on. (For example, near the end of life, I

> believe Larry would not wish to be given antibiotics to cure an otherwise

> life-threatening infection; right now, however, I believe he would want

> antibiotics to relieve the discomfort of a urinary tract infection.)

>

> The healthcare proxy should and does supersede the canned language of the

> form--but the nursing home staff have been taught to rely on the form. So I

> spent a great deal of time creating a version of the form that reflects

> Larry's wishes and my directions about how to implement them. I literally

> cut and pasted, the old-fashioned way, so that the staff would recognize it

> as equivalent to the form they are used to.

>

> I presented my version to the director of nurses at the quarterly care

> plan meeting mandated by the state. She immediately rejected it as as

> " inappropriate " for discussion at the meeting and insisted on the approval

> of the primary care doctor before it could be placed in Larry's chart.

> (This is a doctor who has consistently been unavailable to meet with me

> over the nine months since he was admitted to the nursing home.) The

> nursing director finally, grudgingly, accepted my form for perusal by the

> doctor, but showed no sense of urgency about resolving the issue.

>

> After the meeting, I sought out the social worker, who had been present at

> the care plan meeting and immediately grasped what I was trying to

> accomplish. She seemed mystified by the nursing director's reaction and

> promised to resolve the issue. At 9:30 the next morning, the social worker

> called to let me know that the doctor had approved the form and it was now

> in Larry's chart.

>

> I came away from this experience with several reaffirmations and

> resolutions:

>

> My husband may be in a nursing home, but I remain his primary caregiver.

>

> My daily presence at the nursing home and excellent rapport with the

> nurses who provide outstanding hands-on care are not, by themselves,

> sufficient to insure that Larry's wishes as I understand them will be

> carried out.

>

> Ongoing advocacy, occasional perusal of Larry's chart, and daily check-ins

> with the charge nurses are still the best means available to keep tabs on

> his care.

>

> It might be a good idea to seek out the local nursing home ombudsman,

> whose contact information is posted as required by the state, if only to

> get a better idea of Larry's rights.

>

> It might also be worth sharing my experience with other family members I

> have met during my daily visits and learning what they may have to share in

> return. I have already spoken with one wife, who went home and reviewed the

> forms she had completed on her husband's behalf and feels more prepared

> than before to act on his wishes.

>

> Nursing home management and some staff find it easier to do their jobs

> with minimal interference from family members. It takes perseverance and

> grit, and lots of time and emotional energy, to make sure your family

> member's wishes are respected and that they get the best possible care.

>

> If your disabled family member is still capable enough, encourage them to

> draw up a legal advance healthcare directive naming a healthcare agent.

> Discuss it with them fully to obtain the best possible understanding of

> their wishes.

>

> If you don't have an advance directive of your own, make one. Now.

>

> Lois

>

> ps.com, Vivian DeWalt wrote:

> >

> > Thank you! I will go over my living wills and health care proxy and see

> if

> > I need some changes. Vivian

> >

>

--

Kate Knapp

UMN - OIT

*

" What's past is prologue. " The Tempest, W.S.*

June 11, 2012