Tag: nursing care

Bioethics Blogs

Overcoming The Challenges In Advance Care Planning For Dementia Patients

Many newly diagnosed dementia patients
may have capacity and be fully able to state their preferences about future
medical care when they lose capacity. Their decisions about risks and benefits
of medical treatments while they have capacity flow from their critical interests which are the kinds of interests, which if not
satisfied, would make them think they were worse off in some way or that their
life had not be worthwhile. When a patient is capable of articulating his or
her critical interests we know what is most important about them in terms of
making their lives meaningful. So it would seem that preferences that stem from
critical interests about future medical care provides the most definitive
evidence possible, i.e. substituted judgment, for both medical and family caregivers to have as a basis on
which to be reasonably sure they are making decisions that the incapacitated
patient herself would make if she were in this same situation.

However, many incapacitated dementia
patients who by definition are no longer able to express their critical
interests are indeed still able to express preferences based in their experiential interestsExperiential interests are abiding
biologically based, immediate interests grounded in the quality of one’s life
from activities in which they are finding satisfaction, pleasure, and amusementThe
situation becomes particularly challenging when it appears that the
incapacitated dementia patient is expressing a preference based on experiential
interests that runs contrary to a prior expressed preference stemming from
critical interests.

Because patients with severe dementia
experience their lives in discrete moments, each expressing its own set of
experiential interests, there is also a concern about how to understand the
changing self of the patient and interpret her wishes and preferences
throughout the transitions, particularly at the end of life.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Advance Request for Euthanasia?

Catherine Ferrier raises concerns about advance requests for medical assistance in dying.

__________________________________________

The June 6 deadline for legislation in response to the Carter judgment has come and gone, and our government has yet to adopt a law regulating medical assistance in dying. Too few of us have any idea what we are rushing into.

In the Carter decision the Supreme Court judges stated that the risks associated with physician-assisted death can be limited through a carefully designed and monitored system of safeguards. In contrast, the pressure is on to offer death as a solution for all forms of suffering, available to virtually everyone, including those who fear future suffering or disability.

The Standing Senate Committee on Legal and Constitutional Affairs wants Bill C-14 amended to include the recommendation of the Special Joint Committee on Physician-Assisted Dying, “That the permission to use advance requests for medical assistance in dying be allowed any time after one is diagnosed with a condition that is reasonably likely to cause loss of competence or after a diagnosis of a grievous or irremediable condition but before the suffering becomes intolerable….”

The Old Age, The Seven Ages of Man by Robert Smirke (1798- 1801)

I have spent the last 30 years diagnosing, treating, and caring for people with Alzheimer’s disease and other dementias. It takes no special insight to realize that they are the principal intended “beneficiaries” of this recommendation.

Dutch academic Boris Brummans wrote in his 2007 article Death by Document of his father’s euthanasia death through an advance directive. His father had cancer, not dementia, but the issue is the same.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Court Rules for Clinicians in Medical Futility Conflict with Parents

Mr Justice Cobb

The UK courts have published the latest in a long line of written judgments in medical futility cases.  County Durham & Darlington NHS Trust Foundation v. SS.  This, like most of these cases, was in favor of the NHS.

PATIENT
SS is a 7-year-old girl.  She is critically frail.  SS is profoundly neurologically disabled with encephalopathy and microcephaly.  She has advanced scoliosis of her spine, putting her at serious risk of respiratory failure.  She has thin osteopaenic bones.

CLINICIANS
The clinicians sought the court’s permission as follows: 

“(1) Notwithstanding the lack of consent of the father and mother, it is lawful and in the best interests of the child [that] medical practitioners . . . shall be at liberty to treat her in accordance with their clinical discretion, including any decisions they make whether or not to resuscitate her in the event of her suffering a collapse.”


“(2) The Applicant’s staff shall generally provide such treatment and nursing care as may be appropriate to ensure that S suffers the least pain and distress and retains the greatest dignity.”

PARENTS
The parents opposed the clinicians’ plan.  But the court questioned both their capacity and their level of involvement with SS. 

COURT
In addition to hearing from the clinicians and parents, the court obtained two “truly independent” views.  Ultimately, the court’s objective best interest analysis determined that “any perceived benefit” is “significantly outweighed” both by the burdens of treatment and by “the considerably compromised situation in which she will be left.”

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Only in Sweden

Ernada Hidanovic and her son Armando, refugees in Sweden / Paul Madej      

The political and policing problems of allowing hundreds of thousands of refugees from Africa, the Middle East, and Afghanistan to plod into Western Europe tend to overshadow the difficulties of settling them into a new and alien society.

On the medical front countries in Western Europe are well prepared to cope with the massive influx, according to the World Health Organization. But inevitably there are exotic health issues. Female genital mutilation is one that has made headlines. One that hasn’t is “resignation syndrome” in refugee children and adolescents in Sweden.

This must be one of the most bizarre medical stories of the past decade, although it has received almost no publicity outside of Sweden. Hundreds of children and teenagers, aged 7 to 19, have been diagnosed with a mysterious ailment which leaves them unable to eat, speak and move. According to an article by Dr Karl Sallin and colleagues in Frontiers of Behavioural Neuroscience, the typical patient is “totally passive, immobile, lacks tonus, [is] withdrawn, mute, unable to eat and drink, incontinent and not reacting to physical stimuli or pain”.

Unless they are given intensive nursing care, they will die.

And it happens only in Sweden.

In 2014 Swedish medical authorities started calling the phenomenon “resignation syndrome”, but this is just a label, not a solution. All of the affected children are members of ethnic minorities, many of them from former Soviet republics, with a disproportionate share being Uighurs. Many of them have been traumatised by experiencing domestic abuse, witnessing violence or being harassed.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals – November 2015 Part I by Michelle Pentecost

Here’s comes the first round of what you’ll find ‘In the Journals’ from November. Apart from the listings below, also see the Somatosphere post on a Special Issue in Theory, Culture and Society on Transdisciplinary Problematics, which you’ll find here.

 

Medical Anthropology

Skillful Revelation: Local Healers, Rationalists, and Their ‘Trickery’ in Chhattisgarh, Central India

Helen Mary McDonald

To understand the workings of medicine, healing, placebo, belief, and rationality, medical anthropologists need to pay attention to the complex relations of various forms of revelation, contemplation, and rejoining revelation that attach to illness and healing. In this article two performances of a healing technique located in the agricultural plain of Chhattisgarh, central India, are compared: one representing scientific rationality; the other ‘blind’ superstition. In both performances the practitioner’s aim is to reveal: the local healer reveals witchcraft objects from the afflicted body; the local rationalist society reveals the healer’s technique as a fraudulent trick. Each performance shares ‘an aesthetics of revelation’—they rely on seeing or revealing to obtain their social effect. The interplay between forms of revelation, a reliance on aesthetics for the revelation, and the ways of seeing can indicate how distinctions are made (or not) between doctor and quack, expertise and gimmickry, and truth and falsehood.

 

Suicide and the ‘Poison Complex’: Toxic Relationalities, Child Development, and the Sri Lankan Self-Harm Epidemic

Tom Widger

Suicide prevention efforts in Asia have increasingly turned to ‘quick win’ means restriction, while more complicated cognitive restriction and psychosocial programs are limited. This article argues the development of cognitive restriction programs requires greater consideration of suicide methods as social practices, and of how suicide cognitive schemata form.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

A View from the Other Side: Roboticized Care

After years of disillusionment with regard to the bureaucratization of medicine and dissatisfaction with my increasing inability to care for patients appropriately (issues I wrote about frequently on this site), I retreated, retiring from the practice of medicine in 2014. Having lived a healthy life-style, I hoped to avoid contact with the system, an intention made more possible by the recent trend towards elimination of preventive care practices. Nevertheless, within months I found myself catapulted inextricably into the morass of modern day medicine, experiencing, full bore, the horrors of the system from the other side—from the “patient” perspective.

My first observation: in a system that has sought to improve safety through technological means, errors are prominent. Over the course of two hospitalizations, at least seven medical errors were intercepted and avoided, only because of medical knowledge that enabled me to appropriately question tests and procedures. While most of those errors would have been relatively inconsequential, primarily increasing fiscal costs, two of the errors were potentially dangerous. Moreover these errors occurred despite the use of EMR, instituted to eliminate such errors, since “to err is human.”

But just as alarming was the transmogrification of nursing. As I sat alone in my room and pondered the new role of nurses, I began to wonder what part of their “job description” a robot could not perform? Nursing aids appeared at the door with their self-contained wheeled “companion” to assess vital signs three times a day: they slapped a blood pressure cuff on my arm, put a pulse oximeter on my finger and a digital temperature probe in my mouth; and in 15-20 seconds were wheeling their companion out the door with a cursory look back, questioning, “Need anything?”

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals, October 2015 – Part II by Sultana Banulescu

This month’s “In the Journals…” brings us a body of articles discussing pregnancy, childbirth, nursing, female anatomy, substance abuse, and addiction, with a focus on risk, secrecy, stigma, and strategies of coping and self-preservation.

Critical Public Health

What’s the story on addiction? Popular myths in the USA and Finland

Matilda Hellman & Robin Room

The study inquires into popular myths on addiction in two countries: Finland and the USA. It provides evidence of the manners in which the typical media narratives incorporate basic value traits from their context of origin. We distinguish some main features in the narrative set-ups that support different solution repertoires for dealing with addiction. Belief and hope are crucial story elements associated with the US emphasis on group formation and local empowerment. The individual is assigned obligations and can be morally condemned. In the Finnish journalistic prose, there seems to be an inherent belief that the agenda-setting in itself will propel the question into the institutionalised welfare state solution machinery. The occurrence of a story resolution was customary in the US stories, whereas the Finnish stories were typically left pending. The evidence produced has implications for the ongoing debate regarding the mainstreaming of both definitions of and solutions to addiction problems.

Low income, high risk: the overlapping stigmas of food allergy and poverty

Leia M. Minaker, Susan J. Elliott & Ann Clarke

The aim of this study was to explore experiences and coping strategies of low-income families affected by food allergies. Of particular interest were experiences of allergy-related stigma within the context of poverty stigma.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

In the Journals Oct 2015 – Part 1 by Francis Mckay

Hi all. Here’s the first part of this month’s roundup.

 

Configurations

Nano Dreams and Nanoworlds: Fantastic Voyage as a Fantastic Origin Story
Emily York

Fantastic Voyage, a 1966 Hollywood science fiction film based on a screenplay written by Harry Kleiner, is often associated with contemporary nanotechnology imaginings. In this article, I draw on ethnographic research conducted within a new nanoengineering department and undergraduate major to show how this film is deployed to produce a particular disciplinary and professional identity for nanoengineering. By juxtaposing my analysis of how the film is framed in the department with a close reading of the film itself, I show how both inclusions and exclusions constitute the “nano dream,” a boundary-drawing practice that constructs the nanoengineer as an intrinsically ethical identity. I further assess how the constitutive exclusions of a cultural object taken up within an epistemic community can potentially serve as the starting points for intervention—in this case, a critical pedagogy that posits a “critical nanoengineering” practice.

Number-Lines: Diagramming Irrationality in “The Phoenix and Turtle”
Adhaar Noor Desai

This article considers how changes in the concept of number allow both poets and mathematicians in the early modern period to imagine and articulate concepts that resist referential signification. Specifically, it examines how both Shakespeare’s “The Phoenix and Turtle” and Robert Recorde’s The Whetstone of Witte employ hybridized lines possessing characteristics of both discrete and continuous types of quantity in order to render irrationality. Tracing the development of a formalized poetic “number line,” which understands verses as negotiating between aural, accentual-syllabic numbers and visual inscriptions, this article claims that “The Phoenix and Turtle” functions diagrammatically.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Jahi McMath – Now Alive and on Medicaid

On Friday, the family of Jahi McMath filed its opposition to the demurrers of the medical provider defendants.  In its brief, the family states two remarkable things: 

1.  “Plaintiffs allege, and will present proof of changes and developments which show that Jahi’s condition is one in which Jahi has brain function and is indeed a living person.”

2.  “To this date, Jahi continues to receive 24/7 nursing care in New Jersey, pursuant to her eligibility in that state for participation in the New Jersey Medicaid Program.”

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Healthcare in hard times: Greece

As the Greek health system buckles under economic pressure, patients are taking desperate measures to ensure basic care. Many patients in general hospitals are renting illegal nurses to ensure ongoing attention.

The nurses, usually from eastern European countries, have little or no training, but they offer affordable rates and for many patients are the only option.

“Because of the crisis, the last three years, we see more and more illegal nurses,” said Mr. Anastasios Grigoropoulos, the chief executive of Evangelismos Hospital. 

One top official said he believed that half of the nursing care in Greece came from 18,000 illegal providers.

The nurses perform simple tasks like changing IVs, checking blood pressure and cleaning wounds.  

Sometimes hospital staff lack the jurisdiction to act without police intervention, and they too are aware of the harsh realities of the staff shortage. “You can’t do anything”, claims Grigoropoulos. 

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The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.