New Case - Arthur Johnson III v. Charlotte Regional Medical Center
Autonomy at the End of Life - Classic Quote
-- Ronald Dworkin, Life’s Dominion
Addressing Inappropriate Care Provision at the End-of-Life: A Policy Proposal for Hospitals
Winnipeg Health Region Issues Reports on End-of-LIfe Conflict
Rasouli v. Sunnybrook - Ontario Physicians Must Use CCB to Resolve Futility Disputes
Advance Care Planning - Free Video
Loving Conversations: One Family's Story About the Importance of Advance Healthcare Planning
The American Health Lawyers Association's Loving Conversations video follows a fictional family through the difficult process of making healthcare decisions for a loved one who did not execute an advance directive. Each dramatization is followed by a didactic session where health lawyers answer some of the questions raised in the video. This video will be helpful in facilitating conversations between you and your client or the healthcare provider and her patient.Peter Singer on Joseph Maraachli - Which Lives to Save
If Priests for Life were really serious about saving lives, instead of "rescuing" Joseph so he can live another few months lying in bed, unable to experience the normal joys of childhood, let alone become an adult, they could have used the money they have raised to save 150 lives - most of them children who would have gone on to live healthy, happy lives for 50 years or more. . . . We can obsess over Joseph and Terri - or we can make an honest effort to save the lives of countless children whose names we may never know. It is our choice.
CCB Rules for Surrogate in Desmond Watson Case
Pediatric Futility Controversies: Ethical and Legal Considerations
In May 2011, at the Pediatric Academic Societies meeting in Denver: “Futility Controversies: Ethical and Legal Considerations” Here is the program description: |
In pediatric clinical ethics today, the most common and intractable controversy is about medically futile therapy. Doctors and nurses get frustrated when they believe that further medical treatment is futile, but family members insist that treatment be continued. For professionals, such demands create a clash between their own personal moral beliefs and perceived legal or institutional constraints that force them to act in ways that violate those beliefs. Bioethicists are divided about the appropriate response to such dilemmas. Many professional societies, some hospitals, and some states have policies or laws to deal with these controversies. In this session, we will discuss the legal and philosophic basis for the conflict, review laws, legal cases, and statutes that are designed to address the issues, and will suggest ways that clinicians can respond to futility conflicts. Dr. Truog, an Anesthesiologist, Intensivist, and Bioethicist, will discuss the ways in which futile care might be symbolically important to family members. Dr. Feudtner, a general pediatrician, pallliative care physician, and bioethicist will discuss the ways in which discussions with families about hope can help redirect the goals of care from life-prolongation toward the circumstances of dying. Dr. Meadow, a neonatologist and bioethicist, will present cases from the NICU in which futility controversies were successfully resolved. He will present conversational strategies to help clinicians reach agreements with parents about appropriate care. |
1:00 PM - | Background of the Futility Controversy John D. Lantos Professor of Pediatrics, University of Missouri - Kansas City, Director, Children's Mercy Bioethics Center, Children's Mercy Hospital, Kansas City, MO |
1:10 PM - | Why It is Sometimes Appropriate to Provide Futile Care Robert D. Truog Childrens Hospital Boston, Boston, MA |
1:40 PM - | Discussions with Families About Hope Can Help Redirect the Goals of Care from Life-prolongation Toward the Circumstances of Dying Chris Feudtner The Children's Hospital of Philadelphia, Philadephia, PA |
2:10 PM - | Conversational Strategies to Help Clinicians Reach Agreements with Parents about Appropriate Care William L. Meadow University of Chicago, Chicago, IL |
2:40 PM - | Discussion Discussion |
Non-Medical Goals of Treatment
- Aesthetic (e.g. cosmetic surgery)
- Hedonic (e.g. analgesia)
- Personal (e.g. birth control)
- Psychological (e.g. antidepressants)
- Spiritual
Wilkinson & Savulescu on Medical Futility
Still, I have one concern. The authors write that there are two basic justifications for unilateral refusal: (1) when further treatment is not in the patient's interests, and (2) when further treatment is harmful to others. With respect to the first reason, the authors repeatedly refer to this as a "paternalistic judgment" about the value of treatment and life. Yes, futility seems analogous to paternalism because empowering physicians to unilaterally refuse life-sustaining treatment brings us back to the strong-physician, weak-patient model of the 1950s. But I do not think that providers hardly ever make a "paternalistic judgment" in refusing treatment either because it is unwanted by the patient or because it is not in her best interests.
Calling the unilateral refusal a "paternalistic judgment" seems inaccurate on three levels. First, unilateral refusals do not necessarily involve any paternalism. Second, they actually do not usually involve paternalism. It is not the autonomy of the patient that is overridden but rather the decision of the surrogate. The surrogate is often not an accurate spokesperson for the patient. Therefore, overriding the surrogate actually promotes, not undermines, the patient's autonomy. Third, the authors themselves do not advocate overriding patient autonomy. If the patient herself really wants the treatment, the authors (following Truog) argue that physicians should provide it (unless the harm-to-others rationale obtains). Ultimately, the patient's autonomy is respected. Rarely do we have robust evidence of the patient's preferences applicable to her present circumstances and decide to override those.
Surrogates Replaced with Guardians Fight Back
New Case - Oakville Trafalgar Memorial Hospital v. Desmond Watson
But Maria, his wife of 69 years, has steadfastly insisted he be given every chance at life. “How could I accept what they want to do?” she says. “I can’t. It’s against my religion and against his wishes. I would be murdering my own husband.”
New Report from Massachusetts Expert Panel On End-Of-Life Care
- From the time of diagnosis, as early as possible, every patient with a serious illness that may be fatal should be fully informed of the range of ways they might be taken care of.
- If the patient has preferences among that range, either for efforts to prolong life or for, say, as much time at home as possible, whatever those preferences are should be known, documented, and always available when decisions are going to be made.
- Those preferences should always be respected when a person receives care.
- A public awareness campaign to educate people about their options and encourage them to plan for their own end-stages.
- Spread MOLST statewide.
- Require institutions that care for patients with “life-limiting” conditions to systematically identify patients who could benefit from hospice or palliative care and help them get it.
- Increase training in palliative care, and training in other forms of end-of-life care.
- Require all health insurers to cover hospice care.
- The creation of an “entity” to oversee and evaluate the state’s efforts at improving end-of-life care.
Congress Investigating Agency Advance Care Planning Coverage Circumvention
Texas Treat Til Transfer Bill -- Patient and Family Treatment Choice Rights Act of 2011
National Healthcare Decisions Day in Delaware
Do Courts Favor Families in Futility Disputes?
Rebecca Dresser, a professor of law and medical ethics at Washington University in St. Louis, said U.S. courts generally side with families in such cases that want to continue treatment for loved ones even in seemingly hopeless medical cases.
End-of-Life Disputes Go To Court
Joseph Maraachli Transferred to St. Louis
Guardian Replaces Surrogate. Will Guardian-2 Replace Guardian?
It does not look like this latest court action is a direct attack on Georgetown University Hospital's November 2010 decision to remove the family as decision maker. Rather, the inquiry will probably focus on the articulated rationale of the appointed guardian. It seems that she did not act, as required, as a fiduciary to the patient. The decision might very well be the same after this review. But it seems that the guardian failed to appropriately consider the expressed desires and personal values of the patient and/or her best interest.
Palliative Medicine: Care versus Cure? (Diane Meier video)
Maraachli to Appeal Once Again
Defying the Odds: Kimberly McNeill
Off Sick project
The peg on which this work is hung is the encounter with ‘medical institutions’. Indeed, the very idea of the illness narrative arose partly in response to a tendency for clinicians to neglect the experiences of the patient, seeing them instead in de-personalized terms as biological problems to be solved with science. Illness narratives are often perceived as a means of reversing this trend and re-empowering the patient.
For that reason, the stories that Off Sick is particularly interested in deal with visits to hospitals and other clinical settings. However, it is the ways in which carers and family members turn their experiences of such encounters into narratives that is the real crux of this research. This emphasis on the stories of those around illness, together with its holistic and comparative approach to contemporary, historical and literary materials, is what makes Off Sick so innovative.
The project’s findings will be showcased through academic presentations and publications, and also through an exhibition (scheduled for June 2011) which is aimed not at academics but at individuals and groups whose lives have been affected by illness and who have their own stories to tell about it. In addition, Off Sick runs a lively, varied and ongoing programme of events and public talks drawing on the expertise of literary scholars, historians, social scientists and medical practitioners.
For more information on the project you can visit the Off Sick website, join the Off Sick Facebook group or follow Off Sick on Twitter. Alternatively please contact the project’s Research Assistant, Dr Richard Marsden, on rmarsden@glam.ac.uk.
Not so Black and White
Are psychotic disorders accurately portrayed to the public through popular media? Darren Aronofsky’s “Black Swan” presents a ballerina’s descent into schizophrenia, caused by the pressure and competitive environment of her home and production company.
Nina (played by Natalie Portman) is cast as the Swan Queen in a production of Swan Lake in spite of initial trepidation that she would be unable to fulfil the unrestricted and carpe diem nature of the Black Swan. Swan Lake has the Black and White Swans; characters that are polar opposites from one another, and Nina’s state of mind is presented in relation to the character she dons at any particular time. Is this providing a too clear cut definition of the disorder? Schizophrenia is medically described as a progressive disorder, where as well as the white and black, there is a grey area where the disorder is not in full effect.
This grey area is not presented as much in the film, because the focus is on the Black and White Swans only. The clear cut definition is emphasised by scenes in the artist director’s flat in the film, where the entire room and all furniture is either black or white, with no other contrast given. The artist director himself, when describing the premise of Swan Lake, is reflected in a mirror as having two heads, suggesting a split personality of the oncoming mental disorder. A staging of disease progression is not acknowledged either during the film, and this could possibly lead to a misconception that schizophrenia is a disorder that is either fully present or completely absent.
Initially Nina is a very introvert, quiet character, embodying the White Swan’s innocence perfectly. The loss of inhibition and ability to cast of all shackles coincides with her metamorphosis into the Black Swan and the onset of her psychotic episodes. Whilst disinhibition is a schizophrenic episode, it is not the only likely path. Just as likely are negative symptoms, such as blunted emotions, a complete loss of pleasure and other functional disabilities. These are not touched on in the film, but are still severe symptoms of the disorder.
Overall, however, the film is extremely well made; a provocative and thrilling watch and I would recommend it without a moment’s hesitation. The feeling that the disorder could have been dealt with in a better way lingers, but does not diminish the final product.
John Stezaker and the Medical Profession
Stezaker is perhaps best known for his Mask series which fuses celebrity portraits with landscapes and makes the stones and trees do the talking instead of eyes and mouths. A side-profile picture of a man and woman close to kissing have the fronts of their faces replaced by a picture of a gorge, one with straight edges, perhaps signifying no intimate connection actually exists. The same picture is then collaged with a gorge with overhanging trees and shrubs, hinting the possibility of growing into each other and a mingling of personalities, physical touch or mental connection. Such concepts could be applied to the changing nature of the doctor-patient relationship. The traditional lab-coat-wearing doctor with the paternalistic attitude is reminiscent of the straight-cut gorge. But this is slowly being replaced by the down-to-earth, rapport-building, patient-centred attitude, more similar to the image with the mingling of tree branches and shrubs between the gorges. In the words of Anatole Broyard, “How can a doctor presume to cure a patient if he knows nothing about his soul, his personality, his character disorders? It’s all part of it.”
The smaller series entitled Fall, fuses naked frontal and back photos, split along the length of the body, of man and woman. The uncanny similarities between both male and female body shape and lines flow almost seamlessly into each other (discounting the obvious cut down the middle of the image), but the intriguing part is the question of the purpose of the title. Perhaps the artist is hinting at sexual ambiguity and promiscuousity being the fall of mankind. However, such practices have been the talk of the town even in ancient biblical days of sex-shrines and sex-based religions, and despite fear of being taken out of context, the androgyny or fertility practices of Deuteronomy 22:5 "A woman must not wear men’s clothing, nor a man wear women’s clothing." Doctors are required to be thorough and probe into the sexual history of patients without being judgemental. Yet such topics are never taught sufficiently in medical school.
More curious was the series Tabula Rasa. This is the theory that individuals are born without built-in mental content and knowledge comes from experience and perception, in a sense, the age-old nurture versus nature debate. In this series, polygonal shapes are cut out of pictures; in a picture with a man talking to another two, the heads of the two people are cut out in the polygonal shape, likewise with a picture of a man talking to a woman. The obvious suggestion is the concept of a clean slate when meeting another person, which is analogous in a medical context to every new consultation and patient. Without any details of the entire heads of these people in the pictures, the viewer is left to perceive the faces of these people, as if making heavy use of Gestalt's theories of perception, a psychological concept of visual recognition and interpretation. Too often, medical professionals have preconceptions of patients based on what they look like when they first step into the consultation room. These often then colour our perception of the cultural and societal status of the said patient, and alters the way we think of differential diagnoses, or in private healthcare systems, whether they are even offered more expensive drugs and therapies (I'm drawing this on friends' experiences in other countries). To take patient-centred care seriously then, we should perhaps train ourselves to rely less on visual judgement of people, favouring a more "tabula rasa" approach to patient contact and the doctor-patient relationship. Only then can we start to attempt to actually be non-judgemental and compassionate doctors.
Stezaker's collection in the Whitechapel Gallery challenges our perceptions of beauty and judgements of others, and its concepts may extend well into the medical sphere. There were plenty of ideas and interpretations within the group of medical students who went to the exhibition, and these are just a selection of some of them (mostly my own interpretation and experience).
*All pictures copyright of John Stezaker. Used here only as example illustration.*