Palliative Care is a great support for anyone

who is dealing with a serious illness at any stage, regardless of their prognosis. Its' purpose is to insure all patients and their loved ones have access to the best, most supportive care possible during a time of stress. See the link below for more information. You can also join their facebook page for more information. The link to it is on the URL listed below.

http://www.getpalliativecare.org/?NAV=&PAGE=1

ACCEPTING MORTALITY

Atul Gawande’s essay “Letting Go” won’t let go of me. I’m on my third reading since it appeared in The New Yorker in early August. Subtitled “What should medicine do when it can’t save your life,” the story holds particular power because of the clarity it brings to a subject so desperate for light: how we die.

Death was a tough enough nut before medical science became so adept at saving people who in another time would have bled to death, been defenseless against infection, or had no alternative when the organs they were born with gave out; when no one had to ask whether it’s murder to remove from artificial respiration an unaware and incoherent human being, living what Gawande terms “a warehoused oblivion.” Even ancient rites of passage have been supplanted by 24/7 monitors and an IV drip.

Gawande, a surgeon at Boston’s Brigham and Women’s Hospital, writes of a terminal patient whose sibling wanted to know if her sister was dying. “I wasn’t even sure what the word “dying” meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.”

What I find particularly helpful about Gawande’s piece is its insight into death’s shape-shifting reality, and the position it places doctors, who are expected to know what’s going to happen and when, what to do, explain it well, listen even better, and not trample on hope in the process. This gets even more dicey when cost enters the equation -- money and death are a toxic pairing for dialogue, and today cost and care are inextricably linked. The last thing medical staff want to do is destroy a patient’s hope, and yet what is the doctor to say when the truth, to the degree it is possible to know, is that the patient is dying. The only question is when.

At such a time, communication is as important to get right as a dose of medicine. “A family meeting is a procedure,” a palliative-care specialist tells Gawande, “and it requires no less skill than performing an operation.” And yet communication can be the least of a doctor’s skills.

Gawande writes: “Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs.”

It is a further complication that what a doctor says isn’t necessarily what a patient hears, even when both ostensibly speak the same language. New studies show that patients hear the good news and tend not to hear the bad. Additionally complicating is that, according to a hospice nurse Gawande quotes, patients can somehow understand a fatal diagnosis without acknowledging they are dying. So how should medical professionals negotiate that emotional chasm between working to prolong a patient’s life and telling the patient he or she is dying? Destroying hope does harm, and a patient’s capacity to hear harsh truth varies. But getting the patient and family to an understanding about dying carries this additional incentive: research increasingly shows that palliative treatment for the terminally ill improves quality of life and in some cases extends it.

The Community Ethics Committee, formed as an independent group to provide consultation services to the Harvard teaching hospitals, has brought a public voice to the bioethics dialogue for more than three years now. Our conversations seldom stray far from mortality. Should medical staff be required to administer CPR to a dying patient if the family wants it, even if CPR offers no therapeutic benefit and would make the patient’s last living experience one of violence? What is the toll on medical staff made to perform that act? When is it OK to harvest a dying pediatric patient’s organs? If an organ is available from another institution, but was harvested seconds or minutes earlier than your hospital deems appropriate, is it ethical to give the organ to a patient in desperate need? What matters more, the organ’s ethical taint, or the potential life saved? Is it ever OK for a doctor to participate in euthanasia or assist in suicide? If not, is it appropriate to prescribe medication for a dying patient strong enough to alleviate merciless pain when both prolonging life and ending it are possible outcomes?

And what is a death panel, anyway? I’ve thought about that peripheral subject only enough to dismiss it as a political fiction, but the public fear behind it is so very real and daunting, as is the distrust behind the fear.

“The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task,” Gawande writes. “But the enemy has superior forces. Eventually it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.”

Alas, contemporary medicine lacks both Custers and Lees, according to Gawande. “All-out treatment, we tell the terminally ill, is a train you can get off at any time -- just say when. But for most patients and their families this is asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve. But our responsibility, in medicine, is to deal with human beings as they are.”

Which requires superior communication skills. This conversation, no mere mortal, might go on forever. So I’m hanging on to “Letting Go.”

-- Though Paul C. McLean is a member of the Community Ethics Committee, this blog entry does not necessarily express the views of the CEC or other members.

New impetus for palliative care - The Boston Globe

New Impetus for Palliative Care, Boston Globe Editorial, 9/1/10 (link below)

This brief editorial summarizes and supports the recent New Yorker article on palliative care written by Dr. Atul Sawande. His article is based on a survey of 4,493 Medicare patients. The research was originally published in the New England Journal of Medicine.


New impetus for palliative care - The Boston Globe

Family’s wish, doctors’ dilemma - The Boston Globe

Family’s wish, doctors’ dilemma - The Boston Globe

This article headlined in the Globe yesterday. It outlines the ethical framework by which hospitals and physicians, with ethics committees, discuss and then reach decisions in difficult cases where a families request may be declined.

Top 5 Reasons We Exist

Top 5 Reasons We – the Community Ethics Committee - Exist:


(1) Each hospital is required to have some kind of ethics service (a mechanism in place to address difficult ethical decisions and disagreements in health care as required by the Joint Commission on the Accreditation of Hospitals (http://www.jointcommission.org/ ))

but…

(2) Hospital ethics committees are most often comprised of doctors, nurses, social workers, and other hospital staff – with only a couple community members to provide the “outside” voice of the community.



So…



(3) Hospital ethics committees can sometimes lack broad representation from the diverse communities they serve,



And…



(4) the cultural, religious, and moral values of local community members may not be adequately or comprehensively represented.



And…



(5) As national health care policy discussions unfold and intensify, the need for inclusive ethics policies becomes increasingly relevant.

The Bottom Line: hospital ethics committees should have a direct line of communication with the community they serve!

Our Solution: In Boston, Harvard Medical School’s Division of Medical Ethics is piloting an innovative approach to broadening community representation and bridging the communications gap between health care practitioners and communities: a Community Ethics Committee (CEC).

Read more about it in the blog post (below) that describes our abstract to the ASBH conference.

Read more about Medical Ethics at Wikipedia: http://en.wikipedia.org/wiki/Medical_ethics

Read more about Ethics Committees: http://www.uoflhealthcare.org/Default.aspx?tabid=526

Same-Day Doctor's Visits

Hi, there -

This is an interesting development in medicine . . . "open access" to health care!

Apparently a doctor in Worcester (Dennis Dimitri) has been doing this in his private practice for four years and it seems to work great! A patient gets an appointment the same day based on a first-call, first-appointment system. There are pre-scheduled appointments, too, but there are also folks who can just walk in! The appointments are alittle longer than the traditional 10-minute slot and the reports are that patient satisfaction rises with this open access system in place.

It's an idea that was presented by the Institute of Healthcare Improvement (whose head, Dr. Donald Berwick, now oversees the Centers for Medicare and Medicaid Services), apparently pioneered by Kaiser Permanente many years ago. Less than 20% of practices use mostly same-day appointments.

http://www.kaiserhealthnews.org/Stories/2010/July/14/waiting-for-the-doctor.aspx

Anyway, just another thing to "put in the hopper" in looking at health care and what works best for both patient and providers.

Our poster abstract for the ASBH conference in San Diego

Will you be at the ASBH (American Society for Bioethics & Humanities) conference this fall?

  http://www.asbh.org/

Our poster was accepted, and we're looking forward to sharing our story and our model with you.

Abstract Text:

"Community Voices and Views in Clinical Bioethics Policies: Piloting an Innovative Approach to Broadening Community Representation"

Each hospital must have some kind of ethics service – a mechanism in place to address difficult ethical decisions and disagreements in health care as required by the Joint Commission on the Accreditation of Hospitals. Typically, hospital ethics committees are comprised of medical physicians, nurses, social workers, and other hospital staff, sometimes including a community member who provides an “outside” voice. As a result, hospital ethics committees can sometimes lack broad representation from the diverse communities they serve, and the cultural, religious, and moral values of local community members may not be adequately or comprehensively represented. As national health care policy discussions unfold and intensify, the need for inclusive ethics policies becomes increasingly relevant. In Boston, Harvard Medical School’s Division of Medical Ethics is piloting an innovative approach to broadening community representation and bridging the communications gap between health care practitioners and communities: a Community Ethics Committee (CEC). This group, comprised completely of community members not employed by health care facilities, has been active for three years and is diverse in terms of religious affiliation, age, socioeconomic status, cultural and language groups, and educational backgrounds. When the ethics committee at a hospital wants a community perspective and input on an issue, particularly in the development of policy, a request is made for the CEC to review and comment. Issues that the CEC has addressed include pediatric organ donation using cardiac death criteria, non-therapeutic CPR, staff interactions with patients via social internet media, and palliative sedation. The CEC works with a wide array of local communities to gather opinions and perspectives on a given issue for the purpose of providing policy recommendations. The team augments their outreach with several customized social media technologies, including blogs and Twitter. As part of its mission and as an adjunct to formal policy recommendations to ethics committees at participating hospitals, the CEC plans to conduct educational outreach to local communities, expanding the dialogue which the committee members began in its policy review. Additionally, several CEC members now serve as community representatives on hospital ethics committees, increasing their exposure to the issues addressed by these groups. We describe the current CEC model and recommend that CECs be replicated throughout the country to enable improved representation and facilitate meaningful communication between practitioners and communities. Ultimately, we envision a network of CECs that would share findings at the regional and national levels.
Primary Contributor: Lori Bruce , M.A. (Presenting) ;

Co-Contributors: Carol L Powers, J.D. , HMS Community Ethics Committee, and Christine Mitchell , RN, MS, MTS , Harvard Medical School

Happy 3rd birthday!

This week, we officially celebrate our 3rd year serving the greater Boston community!
As we reflect on our goals for the upcoming year, we wanted you to know that our
primary focus is increasing our communication with the community - that means
more requests for input from you on various medical ethics policies, and that also means we
intend to post more summaries of the various policies we analyze.   We look forward
to deepening our relationships with many Boston-based communities so that we can
better represent you to the Harvard Teaching Hospitals.

We have recently filed for status as a non-profit, and look forward to interacting with
the national bioethics community at this year's American Society for Bioethics & Humanities conference.
If you attend, please stop by our poster and visit us. 

Thank you, Boston, for your support!

Some Docs avoid Facebook, others seek a web presence

The CEC has completed an extensive review of whether doctors & nurses & other hospital staff should have a web presence.  Complex ethical issues include:  what should a doc do if a patient "friends" her?  What if a patient posts suicide threats and the doctor/nurse see these messages after googling the patient?? Should the practitioners reach out to the patient, risking embaressment that they were searching for their patient online?    In related news, USA Today just published an article about some doctors who love Facebook and use it in their practice, and how others avoid it for fear of legal problems. 

 http://www.usatoday.com/news/health/2010-07-08-SOCIALDOCS08_ST_N.htm?POE=click-refer

What do you think??

Screams from Greek stage aim for doctors’ hearts - The Boston Globe

Screams from Greek stage aim for doctors’ hearts - The Boston Globe

As a person who was priveleged to see this performance, I believe this article summarizes how powerfully readings from Greek tragedies can fasciitate thoughtful discussion among medical professionals, ethicists and others around the complex issues of humane end of life care.

Reducing Health Care Costs

Hi, there -

This was an interesting piece of news provided by the actuarial community!! They concluded that if patients knew what things cost, medical care might very well become more affordable!! What a concept - letting folks know what things cost! Being transparent! Giving the primary stakeholder some say! Amazing concept, don't you think? It took some actuaries to figure out it - good for them!

http://www.healthcarefinancenews.com/news/actuarial-survey-says-transparency-would-reduce-healthcare-costs

Step by step, openness may become the norm.

"Health depends far more than on brute technology" - Michael Ruse

A touching story about delirium suffered by patients in the hospital -
it's much more common than we realize.

    http://chronicle.com/blogPost/Hospital-Delirium/25090/?sid=at&utm_source=at&utm_medium=en

This article cites last Sunday's New York Times article, "Hallucinations in Hospital Pose Risk to Elderly":

   http://www.nytimes.com/2010/06/21/science/21delirium.html?scp=1&sq=delirium&st=cse

News story on the dramatic readings!

Here is the Boston Herald story about the Harvard Bioethics Course evening session on End-of-Life care involving dramatic readings of Greek tragedies which Bryan Doerries and the Theatre of War company produced:  

http://www.bostonherald.com/entertainment/arts_culture/view/20100627theater_of_the_mind_heart_and_spirit/

Suicide Tourist

Hi, there -

Earlier today, a friend told me about this Frontline piece called "Suicide Tourist" about a gentleman with ALS who decided to travel to Switzerland to be able to control his death.

More and more folks are considering this as a viable option . . . A British couple - Edward Downes and his wife - chose to go to Switzerland last summer in order to die together in the way and at the time of their own choosing. If any of you have known someone with ALS, it is an excruciating disease in that you are still "in there" but you slowly lose control of all your body's functions. Your body fails you . . . as Craig Ewert says, "you become an empty shell." And the timely facing of decisions that are inevitably on the horizon takes great courage - more courage than I possess! As Craig observes - "Not my choice if I had other options . . ."

But is it right to facilitate an individual's choice to control the time and manner in which he or she shall die? What is right and what is wrong? Our government and Britain's government and many governments have decided as a matter of public policy that choosing suicide - either through euthanasia (when a doctor administers the fatal dose) or through assisted suicide (when the patient self-administers the fatal dose) is wrong. But what about palliative sedation and how is treating someone's existential pain by sedation any different than euthanasia?

Is the ethical justification of "double effect" (when the primary intention is a patient's good - to relieve suffering - while the secondary effect may be a patient's death) sufficient protection to conclude such a death is good and right and should be condoned by our laws?

Personally, I agree with Bob Truog that the rationale of "double effect" is a figurative "fig leaf" - a justification for a difficult decision that has to be determined by each individual patient's need and situation and not by a doctor's intention. All that's to say, I do not know the answer. All I know is that some people suffer greatly and there may be times when compassion cries out a demand for relief. Even Jesus' side was pierced . . .

Anyway, I am rambling to no conclusion so here's the website link. If it doesn't work it was a Frontline piece called "Suicide Tourist" . . .

http://www.pbs.org/wgbh/pages/frontline/suicidetourist/view/

It is hard to watch . . . more precisely, it is excruciating to watch. But you have to think, if it is hard for us to watch, sitting safely in front of our computers, how much harder it must be to live such a life and to make such a decision.

May the calm of our hearts be stirred by great compassion -

Carol

Medical Ethics on Father's Day??

Hi, there -

Here is a poignant piece of memoir from today's NYTimes . . . What Broke My Father's Heart. Having just experienced Theater of War's readings from two Greek plays on end-of-life issues, this story provides a reverberating echo - do we, should we, may we control our deaths? . . . our living seems to have become so medicalized, is there a way off the merry-go-round at the end?

I have left specific directions for my children in this regard . . . have you?

http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html?th&emc=th

Happy Father's Day to all of those biological, emotional, spiritual Dads out there. And many thanks to the Father above who providentially cares for us all . . .

Carol

How to save one life, or more - The Boston Globe

How to save one life, or more - The Boston Globe

Is doing a TV show unethical??

Well, here's an interesting question - does filming a TV show in a hospital step over any bounds of ethical behavior? . . . or good taste? I'm sure some folks get their medical information primarily through their TVs, so some sense arises of doing a public service by letting those folks know what the issues are in a big downtown hospital. But does Boston Med (or Hopkins for that matter?) create some discomfort that is hard to articulate but definitely there in your gut?

http://www.boston.com/ae/tv/articles/2010/06/13/boston_med_bears_witness_to_life_and_death_medical_dramas/?page=full

When hospital interactions are filmed in "real time" is something important lost in the exchange? Is there a loss of professionalism? Is there a loss of protection of the patient and their family? Is there a sense of loss of some aspect of the "art of medicine", which arguably is practiced in the realm of private interactions between patient and physician? Is it a loss of boundaries between caregiver and scene-stealer? And what about the "coincidence" that there is a death at one hospital being filmed that leads to a transplant at another hospital, also being filmed?

And as soon as we raise the question what "should" be done, we are in the realm of ethics. What should be done? Is filming in a hospital setting inherently wrong? Do patient consents really mean anything when people come to a hospital always under duress with a critical need to be healed, if not to be saved, and not to be filmed?

What do you think?

Carol

Getting Paid to Comply

Hi, there -

Here's an interesting piece . . . is it "right" to pay patients to take their medications faithfully or is it coercion? (I thought coercion was the use of force - I suppose money can be forceful, but isn't it also a reward and therefore a "good" or a benefit?)

http://www.nytimes.com/2010/06/14/health/14meds.html?ref=health

Imposing a cost/benefit analysis, it costs less to pay the reward than it does to pay for the extra healthcare costs. And there is a trend here - it seems paying someone to do what they should do is taking hold - they are doing it in schools to raise grades and test scores. Why not in health care? We are becoming a society that does not give if it doesn't get, so decisions in the realm of medical ethics must be based upon social mores of our time, right? And the social mores of our time say, pay patients for compliance.

So, what do you think?

Carol

You are invited to a performance! This Thursday, June 17, 2010

Dramatic Reading of Scenes from Philoctetes & Women of Trachis

Thursday, June 17, 2010
Reception: 5:45pm

Performance: 6:15-­‐8:30pm
Harvard Medical School, Medical Education Center, Walter Amphitheater

2nd Floor, 260 Longwood Avenue, Boston
 
END OF LIFE is an innovative project that presents readings of ancient Greek plays as a catalyst for


town hall discussions with the public about suffering and death as it touches patients, families, and

health professionals who work in the fields of medicine, palliative care, hospice, geriatrics, nursing and

clinical bioethics. This unique, participatory event is intended to promote healthy discussion among

diverse communities—public and professional-- fostering compassion, cooperation, and understanding

about living with chronic suffering and the mortality we all share.

ADMISSION  IS FREE.

SEATING IS LIMITED.

RSVP to the Division of Medical Ethics: DME@hms.harvard.edu

or call 617-432-2570.

To become a part of the End of Life Project, host a performance in your community, support our efforts, continue the discussion online, or for additional information, please contact Bryan Doerries [Director/Translator] or Phyllis Kaufman [Producer] at info@theater-ofwar.com. Visit http://www.theater-of-war.com/.

Actors: Renzo Ampuero, Graduate of American Repertory Theater’s Institute for Advanced Theater Training at Harvard University

Kelley Green, Graduate of American Repertory Theater’s Institute for Advanced Theater Training at
Harvard University

Jay O. Sanders, Film/TV Credits: Edge of Darkness, Revolutionary Road, JFK

Tax Credits for Organ Donation?!?!

At the Congress of the Humanities and Social Sciences taking place this week at Montreal's Concordia University, Mr. De Wispelaere an ethicist and philopsopher propsosed a new measure to increase organ donation rates in Canada.

The idea is turning to a second consenter — a spouse, next-of-kin or family friend — who would openly discuss the idea of organ donation with the patient at a less emotional time rather than when the family is grieving and medical staff may be reluctant to approach them.

The second part of the idea is to offer a government tax credit to the second consenter after the donor's death, whether the organs are used for transplant or not.

To read more, go to:
http://www.cbc.ca/health/story/2010/06/03/organ-donation-tax-credit.html

Bringing Comparison Shopping to the Doctor’s Office

I came across this article in the New York Times and thought it was quite interesting.

A link to the article is posted below-
http://www.nytimes.com/2010/06/11/technology/11cost.html


Ideally, price transparency will lead to higher quality and lower cost health care. However, it may also have several unintended consequences such as pushing smaller provider groups out of practice and lowering appropriate and necessary ultilization rates of health care services.

In any case, bringing price transparency to health care has the power to significantly change the way health care is demanded and consumed in this country.

Putting the human touch in health care - The Boston Globe

Putting the human touch in health care - The Boston Globe

Uninsured more likely to die in hospital

Hi, there -

An interesting article appeared today - I am linking to Dr. Gupta's blog since he presents the information more clearly than other sites have done.

http://pagingdrgupta.blogs.cnn.com/2010/06/10/uninsured-more-likely-to-die-in-hospital-study-finds/

So, they aren't sure why, but the uninsured are more likely to die in the hospital.
Is it because the uninsured delay going to the hospital? Very likely . . .
Is it because the uninsured receive fewer high-cost life-saving treatments? Quite possibly . . .
Is it because the uninsured are more likely to receive substandard care? Seems to be the case . . .

Now the question is, what do we do about it?? As someone whose child was very ill many years ago and had no insurance coverage (the company refused to cover him because he had a "pre-existing condition in the womb"!), I did not fully appreciate the fact that he might have been more likely to die simply because he was uninsured.

Disclosure might be necessary as a first step to transparency - perhaps a sign should be placed at the foot of each bed saying "NOTICE: if you are uninsured, you are more likely to die in the hospital than the insured patient in the bed next to you. Sorry for the inconvenience."

Even though I know that our area hospitals go out of their way to provide free care to patients who are uninsured and vulnerable, this article gives us something sobering to think about.

Carol

Medical Ethics and Interrogations

Just saw this in today's NY Times and found it to be thought-provoking and troubling. Reminds me of a piece written over two centuries ago by an executioner during the French Revolution and his understanding of a professional executioner's role in society - doing what others do not wish to do . . . doing what others don't want to know about.

But now we know . . .

Happy Monday -

Carol

http://www.nytimes.com/2010/06/07/world/07doctors.html?emc=eta1

National hospice org advocates for palliative sedation

NHPCO (http://www.nhpco.org/) Releases Statement and Commentary on Palliative Sedation Therapy to Promote Greater Understanding

Complete document found at:   http://www.nhpco.org/files/public/JPSM/NHPCO_Pall-Sedation-Ther_JPSM_May2010.pdf

(Alexandria, Va) – For the very limited number of imminently dying patients whose pain is intolerable and unresponsive to other palliative interventions, the National Hospice and Palliative Care Organization believes that palliative sedation can be a treatment option that should be considered by healthcare providers, patients, and families.

Palliative sedation refers to the lowing of patient consciousness using medications for the purpose of limiting patient awareness of suffering that is intractable and intolerable.

In releasing its position statement and commentary on the "Use of Palliative Sedation in Imminently Dying Terminally Ill Patients," NHPCO seeks to:

1. clarify the position of NHPCO on the use of palliative sedation for patients at the end of life,

2. recommend questions and issues to be addressed when palliative sedation is being considered, and

3. assist health care organizations in the development of policies for the use of palliative sedation.

Approved by the NHPCO board of directors in December 2009, the statement and commentary appears in the May 2010 issue of The Journal of Pain and Symptom Management, and is now publicly available.

The position statement consists of six core tenets:
Availability
For the small number of imminently dying patients whose suffering is intolerable and refractory, NHPCO supports making the option of palliative sedation, delivered by highly trained healthcare professionals acting as an interdisciplinary team, available to patients.

Proportionality
Since the goal is symptom relief (and not unconsciousness per se), sedation should be titrated to reduce consciousness to the minimum level necessary to render symptoms tolerable. For most patients this will mean less than total unconsciousness, allowing the patient to rest comfortably, but to be aroused.

Interdisciplinary Evaluation
There must be a physician with expertise in palliative care leading the intervention. Patients suffering at the end of life will receive optimal benefit from the involvement of a highly-skilled interdisciplinary team. NHPCO recommends convening an interdisciplinary conference specifically about the use of palliative sedation for each patient with whom it is being considered. In all cases, care must be patient- and family-centered. If the needs of the patient and family differ, the primary focus is on the needs of the patient.

Education
Professionals involved in the process of providing palliative sedation must have training and competence in this particular intervention. Providers should be engaged in ongoing education that addresses symptom assessment and management. Further, facility with integration of the ethical considerations related to use of palliative sedation is essential.

Concerning Existential Suffering
Suffering can occur even when physical symptoms are well controlled. As with any other type of suffering, NHPCO believes that hospice and palliative care professionals have an ethical obligation to respond to existential suffering using the knowledge, tools, and expertise of the interdisciplinary team. It should be noted that the lack of concurrence by the NHPCO ethics committee on the definition and assessment of existential suffering precludes a recommendation regarding the use of palliative sedation for existential suffering. NHPCO strongly urges providers to carefully consider this question and supports further ethical discussion.

Relationship to Euthanasia and Assisted Suicide
Properly administered, palliative sedation of patients who are imminently dying is not the proximate cause of patient death, nor is death a means to achieve symptom relief in palliative sedation. As such, palliative sedation is categorically distinct from euthanasia and assisted suicide.

This statement addresses the use of palliative sedation only for patients who are terminally ill and whose death is imminent.

"This document provides valuable guidance about a complex issue that—while not frequently used—is often misunderstood," said J. Donald Schumacher, NHPCO president and CEO. "Our intention is to address the ethical issues surrounding palliative sedation and help hospice and palliative care providers create policies and guidelines to ensure they are well-prepared concerning this treatment option."

"We are not calling for an increase in the practice of palliative sedation but want to take a major step forward to redress some of the common misconceptions," added Schumacher.

Developed by the Palliative Sedation Task Force of the NHPCO Ethics Committee, members of the task force wanted to indentify and analyze the most robust evidence and arguments about palliative sedation and summarize that material in a way that would be helpful to the NHPCO membership.

Timothy W. Kirk, who led the task force commented, "We want to stress in this document that palliative sedation, like all interventions in palliative care, needs to be part of evidence-based practice. There are evidence-based clinical protocols based on a growing body of research that many clinicians are not aware of, but should be. Simply turning up current pain medications is not evidence-based sedation. We have a moral obligation to give our patients the best care possible, and this document is intended to help providers reflect on the nature of that obligation when it comes to the practice of palliative sedation."

The complete statement and commentary, as it appears in JPSM, is available at the NHPCO website (go to nhpco.org/newsroom and click on the link for NHPCO Ethical Statements and Position Statements).

The cover story of NewsLine, May 2010, is about the development of this document.

Contact:
Jon Radulovic, NHPCO, Vice President of Communications
NHPCO
1731 King Street
Suite 100
Alexandria, VA 22314

Should new laws make organ donation the presumed choice?

Should Laws Push for Organ Donation?
The New York Times


May 2, 2010, 7:00 pm

By THE EDITORS
"A New York assemblyman has introduced a bill aimed at making the state the first to presume people want to donate their organs unless they specifically say otherwise. Under current law, people give permission to donate their organs by checking a box on their driver’s licenses or filling out a donor card.
 
The legislation, introduced by Assemblyman Richard Brodsky, a Westchester Democrat, is in two parts: the first step would end the right of the next of kin to challenge the decisions of their dead or dying relatives to donate their organs.
 
In a second measure, which is far more contentious, people would have to indicate in official documents — their driver’s licenses, most commonly — that they specifically don’t want to donate organs. If the box is not checked, it is presumed the person wants to donate.

What are the ethical and practical issues involved in changing the law? Is a “presumed consent” system an effective way to increase the number of organs available, and thus save lives, or will it deter public support for donation? "
Full article here:
http://roomfordebate.blogs.nytimes.com/2010/05/02/should-laws-encourage-organ-donation  

Informed Consent

INFORMED CONSENT: HOSPITALS EXPLORE PERSONALIZING RISKS
Some facilities are giving surgical patients individualized risk estimates. Will cost and quality data be the next elements included in informed consent documents?
By Kevin B. O'Reilly, amednews staff .

Informed consent has long been a bedrock principle of medical ethics, but the form intended to document a patient's understanding of a proposed intervention is too often written at a college reading level and is ambiguous about risks. Some doctors are out to change that, bringing a personalized medical approach to informed consent. Nine medical centers around the country -- including the Mayo Clinic in Rochester, Minn., and the Henry Ford Hospital in Detroit -- are testing an informed-consent process for patients undergoing nonemergent cardiac catheterization and potential angioplasty. The Web-based program draws on a national cardiovascular database to predict individualized risks of death, bleeding or restenosis. Proponents of the effort say informed consent should include even more data, telling patients about cost, alternative treatments, and doctors' and hospitals' quality performance. [...]

Read the entire article in American Medical News:

www.amednews.com/2010/prl20517

___________________

Thought you might be interested - this new approach to informed consent speaks directly to personalized risk levels and apparently tries to do away with all the small-font, complex wording that no one reads or comprehends. Should be a hopeful sign that more changes may be around the corner!

Carol

Making Your Wishes Known at the End of Life

Tomorrow is Health Care Decisions Day! Follow the link to read a touching article on advanced directives in today's New York Times, and learn about how a living will can ensure that your end-of-life wishes are respected:
http://www.nytimes.com/2010/04/16/health/15chen.html?ref=health

Keith Oblermann Comments on Palliative Care

This may be a bit controversial. Keith Olbermann is an impassioned commentator. His perspective here is both personal and political. He did this piece on the eve of his father's death which coincided with President Obama's Health Care Summit meeting with Congress.

The video clip:

     http://videocafe.crooksandliars.com/heather/keith-olbermann-special-comment-my-father

Do you have an advanced directive?

National Healthcare Decisions Day is coming up on April 16th.
Do you have an advanced directive?  Do you know why you might want one?

     http://www.nationalhealthcaredecisionsday.org/

Here is a story about a PA hospice planning an outreach to the community:

     http://www.theprogressnews.com/default.asp?read=21889

And here is an informative excerpt from the National Healthcare Decisions Day website. The links don't copy over, so please visit http://www.nationalhealthcaredecisionsday.org/resources.htm directly.

What is an advance directive?

All adults can benefit from thinking about what their healthcare choices would be if they are unable to speak for themselves. These decisions can be written down in an advance directive so that others know what they are. Advance directives come in two main forms:

•A "healthcare power of attorney" (or "proxy" or "agent" or "surrogate") documents the person you select to be your voice for your healthcare decisions if you cannot speak for yourself.

•A "living will" documents what kinds of medical treatments you would or would not want at the end of life.

How can I learn more about advance directives/advance care planning?

The links below explore a variety of resources to help you make, discuss and document future healthcare wishes and decisions.

•AARP: End-of-Life Planning

•Aging with Dignity: Five Wishes

•American Bar Association: Tool kit for Health Care Advance Planning; 10 Legal Myths about Advance Medical Directive

•American Health Lawyers Association: Guide to Legal Issues in Life Limiting Conditions

•American Hospital Association: Put It In Writing

•Caring Connections: Advance Care Planning; Financial Information; Planning Ahead Checklist; Free Brochures

•Center for Practical Bioethics: Caring Conversations Workbook

Where can I get an advance directive?

Aging With Dignity (Five Wishes)

The Five Wishes document helps individuals express care options and preferences. The advance directive meets the legal requirements in most states and is available in 20 languages for a nominal fee. Order online or call 850.681.2010.

Caring Connections

Caring Connections offers free, state-specific advance directives for all 50 states and DC that meet the legal requirements for each state. Download individual copies for free or call 800.658.8898 to have a copy mailed to you.

Center for Practical Bioethics

Caring Conversations is a workbook to help individuals and families communicate with each other about their healthcare preferences and contains advance directive documents. These forms are valid in every state when notarized and signed by two witnesses. Download for free or call 800.344.3829 to order.

Project Grace

Project Grace offers a free Advance Care Planning Document that is legally valid in states that do not require forms to be notarized. Download for free, or call 877.99.GRACE to order a copy.

National Resource Center on Psychiatric Advance Directives

National Resource Center on Psychiatric Advance Directives offers general and state-specific information on psychiatric advance directives.

The Will to Live Project

The Will to Live Project provides state specific forms for designating an agent and stating healthcare wishes.

International Task Force on Euthanasia and Assisted Suicide

The International Task force offers a durable power of attorney document (in either multistate or state-specific versions) that expressly defines and prohibits euthanasia.

Organ Donation Choices: www.organdonor.gov or www.donatelife.net

State-Specific Resources (see http://www.nationalhealthcaredecisionsday.org/resources.htm )

End-of-Life Discussion

Harvard Medical School just hosted readings from Sophocles to faciliate a dialogue about end-of-life issues.  Audience members included hospice workers, med students, ethicists, MDs, artists, nurses, and more.

Issues raised include the following:

- Whether people have a right to "write their ending" - for instance, should people get to choose whether they die at home or in a hospice or a hospital? Or choose how much life-sustaining procedures they receive, especially when death is expected within hours or days?

- There can sometimes be a delicate dance among patient, family members, and care teams when balancing the requests of the dying patient with the emotional needs of the family, or the belief systems of family/patient/care teams.  For instance, what if the dying patient had a long-standing belief that they don't want to receive extreme measures of life support- but the adult children of the patient remember the strong, resilient parent who would have "fought against anything?"  What if the dying patient is in extreme pain and they are ready to accept the inevitability of their death, but the family want more time with him/her?  Whose wishes should the care team honor?
-How excruciatingly difficult it can be for family & care teams to witness and acknowledge the suffering of the patient/loved one.

- Some members of care teams talked about what an honor & privilege it is to help patients pass away while they are in their own home, instead of a hospital setting.
- Poignant lines from the Sophocles readings include a statement by the son of a dying man, who said, "I am pained by your pain."  This line was referred to frequently during the post-reading discussion.
- Another poignant line referred to the dying person's wish to be "seen" by their loved ones - a deep desire for recognition & acknowledgement.
- How some people in chronic or overwhelming pain refer to their pain in the 3rd person. The pain might be spoken of as "she" or "it" and sometimes the pain seems more than the person, as in "There is no more me, only it," referring to how the dying person no longer feels autonomous and is taken over by the pain.

- Some care team members discussed patients who ask for euthanasia treatments and whether they are denying themselves the 'gift' of self-discovery by consciously experiencing their dying process. What do you think?

- We briefly discussed how these complex end-of-life decisions can be further complicated by patients who are suffering from dementia and may be unable to understand what is happening to them.

The high price of pain - The Boston Globe

The high price of pain - The Boston Globe

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NYTimes: Social Networks & the Chronically Ill

The NYTimes is discussing one of our hot topics! 

"Social Networks a Lifeline for the Chronically Ill"


By CLAIRE CAIN MILLER

Online social networks have become valuable sources of information and camaraderie for people with chronic diseases or disabilities.
 
http://www.nytimes.com/2010/03/25/technology/25disable.html?emc=eta1

Controversial new organ donation program in ERs

A new federally funded program to promote increased rates of organ donation is under scrutiny.  Advocates say it's a promising new avenue to increasing the number of organs available.  Critics are highly concerned that it crosses too many ethical boundaries.  One bioethicist called the program "ghoulish." Some worry that ER doctors' priorities may become muddled:  given the need to remove organs quickly (after death) to increase donation viability, will a patient's dying process be hastened? Will a patient's family wonder if their loved one's death was not the utmost priority?  Will doctors and care teams feel that their priorities are split between a caring death of one patient and a speedy organ retrieval to help save someone else's life?  

What do you think?  Read about the issue here:

  http://www.boston.com/news/health/articles/2010/03/21/in_the_emergency_room_a_new_ethics_dilemma/

Aging

Hi, guys -

Here are two stories that Lori passed along (she's skiing, so I'm posting!) . . .

Thursday's (March 4) "On Point" broadcast addressed a new book that's just coming out - a daughter's story of her elderly mother who decided to die after it was clear that she would deteriorate in a way that was not how she wanted to die. Among other illnesses, she had Parkinsons. In the end, after looking at different options & consulting the Hemlock Society, she decided to stop eating.

http://www.onpointradio.org/2010/03/a-mothers-life-and-death

The other story is also about aging, but it's HAPPY!

In the NYTimes "Often we imagine that life ends at the nursing home door, a myopic view that hurts the aging as well as ourselves."

http://www.nytimes.com/2010/03/02/health/02case.html

Enjoy . . . you know what they say - growing old is hard but it beats the alternative by a mile!!

Enjoy your Friday,

Carol

Eight Health-Care Lobbyists for each Congressman?

Hi, guys -

Just thought you might want to know . . . last year there were eight healthcare lobbyists for every Congressman/woman. And, no, it wasn't insurance companies that were the most heavily represented. It was trade, advocacy and professional organizations!! Wonder what that's all about?? How about Dunkin' Donuts lobbying against a tax on soda which would have helped fund health care reform? How about the fact that more hospitals funded lobbyists than insurance companies? How about the fact that the number of health care lobbyists in 2009 more than doubled - starting in the first quarter at 1,400 and ending the final quarter with almost 3,700! Gee whiz . . . no wonder it's a mess . . . instead of a representational government, we have a lobby-irrational government . . . in the lobby, for the lobby, by the lobby . . .

http://www.publicintegrity.org/articles/entry/1953/

Just thought you might be interested.

Carol

Massachusetts Considering End-of-Life Legislation

Hi, guys -

It has been of interest to me that the topics we have tackled as members of Harvard's Community Ethics Committee have tracked pretty consistently with what is going on "out in the world" as reflected by the press. When we reviewed organ donation on cardiac death, there were NYTimes articles on that very topic. When we talked about CPR and whether it is an advisable treatment option in every situation of cardiac arrest, lo and behold, articles appeared in the press discussing that very topic!! And now, simultaneously with our wrestling with the topic of Palliative Sedation, the Massachusetts legislature is taking up end-of-life decision-making!! I thought you might want to know!! Here's an NECN piece on it that aired Monday -

http://www.necn.com/02/22/10/Right-to-die-battle-on-Beacon-Hill/landing_newengland.html?blockID=184909&feedID=4215

What do you think??

Best -

Carol

Euthanasia in the NYTimes: BBC Host Admits Killing Ailing Partner

What do you think about this article?

BBC Host Admits Killing Ailing Partner
http://www.nytimes.com/2010/02/18/world/europe/18britain.html?scp=1&sq=Ray%20Gosling&st=cse
 
By SARAH LYALL

"The confession has put Ray Gosling, who has made hundreds of documentaries for radio and television, in the center of a furious long-running debate about euthanasia in Britain. ... Ray Gosling was arrested after he said on television that he had smothered his partner, who was ill with AIDS, long ago."

Can We Talk?

Put sixteen very different, broadly representative members of the greater Boston community together in a room and start them discussing the most emotive, profound questions you can think of. Is freedom more important than dignity? What is death? What counts as a violation of privacy? Shut the door and start the clock. How long until security needs to be called in?

In fact, my experience at the Community Ethics Committee has boosted my confidence in the possibility of genuine, constructive communication across religious, racial, age, and class spectrums about some of the pressing moral issues of our time. Naturally, sometimes we find we need to backtrack and redefine our terms – “Wait. How are we using the word ‘consent’ here?” Some questions are so thorny that we might need to go back to our communities, sleep on them (the questions, not the communities), and meet again to have another go. Often we need further input from health care providers and patients at the sharp end of all this deliberation. Of course total consensus is a rare bird, but the CEC manifests a respectful, tolerant, and frank exploration of fundamental differences that should make any believer in democracy blush with pleasure.

As one with a professional commitment to fostering effective communication, and as one jaded by the quality of much contemporary political debate, I welcome the CEC. Heck, as a human being with hope in our capacity to reason, I welcome it. Thank you, Community Ethics Committee.

Julian Willard, CEC member, 1/2/10

End of Life Care

The New York Times published an article today about palliative sedation, the medical topic we are currently evaluating.

    "Months to Live: Hard Choice for a Comfortable Death: Sedation"


    By ANEMONA HARTOCOLLIS

    http://www.nytimes.com/2009/12/27/health/27sedation.html?_r=1&emc=eta1
    "Inducing sleep with drugs near the end of life is a widely used treatment even as it vexes families and doctors."