CENTRES Newsletter Issue 12

7/31/2019 CENTRES Newsletter Issue 12

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CENTRE FOR BIOMEDICAL ETHICS N ATIONAL UNIVERSITY OF SINGAPORE

CENTRES

Clinical Ethics Network for Training, Research and Support A Quarterly Newsletter Issue No.12 July 2012: Decision-Making in the End the of Life

EDITORIAL:

Decision-Making in the End of Life

By Syahirah A. Karim,

Research Associate,

Centre for Biomedical Ethics (CBmE),

Yong Loo Lin School of medicine (YLLSOM)

National University of Sinagpore (NUS)

Decisions have to be made on different aspects of care at the

end of life, and these decisions are not just shaped by the

patient's wishes alone. Palliative care at the end of life plays a

role in providing terminally or chronically ill patients care which

ensures their days are made as comfortable as possible.

In his lectures for the first set of CENTRES's expert lecture

series, Mr Barry Ashpole, a communications specialist in end-

of-life and palliative care, covers three topics in end of life and

palliative care which highlight the issues: 'Withdrawal or

withholding of life-sustaining treatment', 'The Family

Conference' and 'Advance Care Planning'. The CENTRES

expert lecture series is new in our lineup of activities where

experts from different fields of ethics will be invited to speak on

relevant clinical ethics issues. These expert lectures will also

have our training sessions incorporated into the programme.

In the first lecture, "Withdrawal or withholding of life-sustaining

treatment", Mr Ashpole presents the complexity of issues faced

by patients, their families and doctors in both refusal of

treatment by the patient, or making the decision to withhold or

withdraw treatment for an incapacitated patient. Besides the

conflicting perspectives in choosing comfort over cure in the

end of life, public debate over the patient's right to refuse

treatment and physician assisted suicide also contributes to the

complexity of decision-making in these situations.

On "The Family Conference", Mr Ashpole discusses how

the quality of care at the end of life can be affected by the

quality of communications with the patient's family.

He outlines factors which the healthcare team has to

note and navigate through during a family conference

to discuss the management of care and decisions to be

made for the patient.

Not only do the dynamics of a family come into play,

but the dynamics of the healthcare team also play an

important part in determining the outcome of the

conference.

In the last lecture of this series, Mr Ashpole then

speaks about the role of "Advance Care Planning" in

decision-making at the end-of-life. Though seen as a a

tool which will greatly ease decision-making at the end

of life, Mr Ashpole presents overlooked issues which

could complicate an ACP that is already in place, such

as intervention by a family member and changes in a

patient's condition. He also points out the distinction

between an ACP and an Advanced Medical Directive

(AMD).

This issue of the CENTRES newsletter essentially

presents to you three topics in the end of life and

palliative care which all share the theme of decision-

making at the end of life, not just by patients but by

their families and doctors. The articles by Mr Barry

Ashpole covering the issues presented during his

lectures also include a list of recommended readings

and online resources for each topic. With the growing

wealth of resources and experiences being shared on

issues in the end of life, it is hoped that these will help

healthcare professionals in end of life care as they

navigate the decision-making process with the patient

and their family.

Syahirah A. Karim



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Mr. Barry Ashpole,

Educator, communications

consultant and media

specialist.

Barry Ashpole's involvement in palliative and end-of-life care dates from 1985. As an educator, communications specialist and media specialist, he has over the years been involved in or responsible for a broad range of initiatives in Canada, at the community, regional,provincial and national level. Something of a "hybrid," Barry focuses on advocacy, developing communications strategies, and policy development in addressing issues specific to those living with a life-threatening or terminal illness – both patients and families. In recent years, he

has applied his experience to education, developing/ teaching online and in-class courses, facilitating issue specific workshops for frontline care providers.

Withdrawal or withholding lifesustaining treatmentThe complexities of end-of-life care decision-making

The concepts of patient-centred care and patientautonomy have, in many respects, redefined therelationship between health professional and patient, incomparison to just a generation or two ago. As aconsequence, the decision-making process in manysituations has become a veritable emotional and ethicalminefield. This is perhaps most evident in end of life care.

There is a high public expectation of medicine'scapabilities. Coupled with a patient's wishes and afamily's hopes, and often the latter's reluctance or unwillingness to "let go," this has more often than notcomplicated the decision-making process in end of lifecare. Added to this is the not uncommon attitude of manyhealth professionals who sense failure when a patientdies. Compounding the situation are advances in medicaltechnology; these have, in general, fostered anaggressive approach to sustaining life, even when theremay be little or no chance of meaningful recovery.

The evolution of palliative care – still only available to arelatively small percentage of people living with a terminalor life-limiting illness – has given reason for pause, tofocus on the quality rather than the quantity of life.

It has introduced the concept of "slow medicine,' whichallows patients to weigh the risks and burdens of interventions or treatment that will likely not significantlyextend or improve the quality of their lives.

For many, the philosophy of palliative care offers thefreedom to choose comfort over cure. But, mainstreammedicine, for the most part, continues to cater to a

Society that in general still consciously or unconsciouslydenies and defies death.

Discussion of the withdrawal or withholding of life-sustaining treatment cannot easily be isolated from themyriad of clinical or ethical issues that currently surroundend of life care and health care in general. At the patientbedside, questions of medical futility are being raised; inthe public arena, debate rages about an individual's rightto refuse life-sustaining treatment or to be assisted intheir death; and, the cost of health care, particularly in thelast months or weeks of a person's life, and itsramifications, are being scrutinized.

Canadian Case Study

In Canada, in the last year or three, there have beenseveral highly publicised cases in which physiciansattempted to act against either a patient's documented or a family's expressed wishes to sustain life. One of thesecases is presently before the law courts. The court'srulings will have far-reaching consequences about whohas the final right to withdraw or withhold life-sustainingtreatment.

It was reported 17 May 2012 that the Supreme Court of Canada will hear an appeal by doctors over who has the

final authority to end a comatose patient's life. The court'sruling on the controversial case involving a Toronto mancould clear up a legal grey area in Canada that fails toclarify whether physicians or a patient's family have thefinal say on when to pull the plug. The case will be heardlater this year.

Five months after Hassan Rasouli brought his family toCanada from Iran in 2010, he had routine surgery for abenign brain tumour.



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Bacterial meningitis infected his brain leaving him unresponsive.

Within weeks, the surgeons wanted the family to take Rasouli off a ventilator that was keeping him alive, but his wife, adoctor in her native Iran, thought it was too soon. In January 2011, Rasouli's family thought he started showing signs of improvement, even though his diagnosis maintained he was in a persistent vegetative state.

In Ontario, cases where there is no agreement are supposed to be referred to an expert tribunal, the Consent & CapacityBoard [CCB]. Doctors at the hospital refused to do that and instead took the case to the Ontario Superior Court in

February 2011, which rejected the doctors' arguments that they didn't need consent to remove life support and ruled thatRasouli's case be referred to the CCB. The doctors' case was rejected by the Ontario Court of Appeal in June 2011. Itwas then appealed to the Supreme Court of Canada. In an interesting development, Rasouli is now considered to be"responsive," which means that a Supreme Court ruling would no longer apply specifically to Rasouli and his ventilator will not be removed regardless of the outcome.

Discussion

The withdrawal or withholding of life-sustaining treatment is oneissue that has, to a greater or lesser extent, fed the rhetoricsurrounding the ongoing debate on assisted or facilitated death.Others that have complicated public discussion include theprinciple of double effect; medical futility; resuscitation; artificial

hydration and nutrition; palliative or terminal sedation; persistentvegetative and minimally conscious states; and, painmanagement.

This, in part, reflects a lack of appreciation or understanding bythe public who sees ethicists and health professionals as"splitting hairs" in rationalizing one decision over another, whenarguing the ethics or legalities of a particular course of action.

As an example, in the minds of many people, it is difficult to distinguish between the withdrawal or withholding of life-sustaining treatment and hastening death.

They do not appreciate that the former is allowing the illness to take its natural course and is viewed ethically or legallyas not a deliberate action to shorten life.

N.B. The lecture on the Withdrawal or Withholding of Life-SustainingTreatment, was videotaped and can be viewed on the CENTRESwebsite together with annotated versions of the author's PowerPointpresentations (http://www.centres.sg/node/117).

Recommended Reading

Manning J. 'Withdrawal of life-sustaining treatment from apatient in a minimally conscious state.' Journal of Law &Medicine, 2012;19(3):430-435.

Al-Jahdali H. et al. 'Advance medical directives: A proposednew approach and terminology from an Islamic perspective.'

Medicine, Health Care & Philosophy, published online 19February 2012.

Olsen ML. et al. 'Ethical decision making with end-of-life care:Palliative sedation and withholding or withdrawing life-sustaining treatments.' Mayo Clinic Proceedings, 2010;85(10):949-954.

Melhado, LW. et al. 'Patients' and surrogates' decision-making characteristics: Withdrawing, withholding, and continuing life-sustainingtreatments,' Journal of Hospice & Palliative Nursing, 2011;13(1):16-28.

http://www.centres.sg/node/117





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Resources

The weekly report is posted on Centre for Biomedical Ethics (CENTRES) website: (http://www.centres.sg/node/102)

Media Watch

Weekly annotated listing of current articles and reports by Barry Ashpole

http://www.ipcrc.net/archive-global-palliative-care-news.php

N.B. Scroll down to 'What's New: Reading List Update.' Media Watch provides an annotated compilation of what is appearing in the literature – inhealth care and related fields – and the news media, and is distributed to health professionals, policymakers et al who are active or have expressed aspecial interest in hospice, palliative care, and end of-life issues in general. The intent of the weekly report is to help them keep abreast of currentthinking; it is intended as an advocacy or research tool.

The Family ConferenceCorrelation between the quality of patient care and the quality of communication

Facilitating a family conference brings into sharp focus two basic challenges for the care team: their individual capacity tonavigate or negotiate family dynamics, and the ability of each member of the care team to react or respond to either pa-tient or family in a timely and sensitive manner. It is critically important, therefore, to be mindful of the fact that people donot all share the same capacity to express their feelings, articulate their thoughts, formulate questions or retain informa-tion. This is particularly true at times of crises, such as in a highly emotional charged situation that can often occur duringend of life care.









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Health professionals need also to be mindful at all times of two critically important factors:

The impact of a terminal illness can reverberate throughout the family; as a consequence, they can experience bothemotional and physical stress.

Invariably, each member of the family will bring to any conversation or discussion a unique perspective on the situationand an intimate knowledge of the patient (and of each other). The latter is often termed "the emotional baggage."

Many people do not feel comfortable in group situations; there are those who are more vocal than others and those, noless concerned or feeling, who lack the confidence or self esteem to express themselves. There is a critical need to hear and observe what is being "communicated," whether verbally or non-verbally. When at the patient bedside or in conver-sation with family, it is critically important to acknowledge the simple fact that there is a direct correlation between thequality of communication and the quality of patient care. The time taken to talk, listen and observe can be precious andhave a profound effect on the decision-making process. Whether with the patient or family, communication should beconsidered in and of itself a therapeutic intervention.

In many cultures harmony and mutual respect are cornerstones of mental, physical andspiritual well-being, and a high value is placed on beneficence. There is a long tradition of family-centred decision-making. In predominantly western cultures, however, the focustends to be on patient autonomy, the individual's right to self-determination. In either, truth-telling and the need to foster hope present additional challenges to members of the care

team.

In many respects the family of today is vastly different from the family of a generation ago.This can be said of many cultures. In the past, each member of a family as a general rule

lived in fairly close proximity to one another. They shared similar values, similar political or religious beliefs. In retrospect,they seemed to have had much more in common with one another. Today, in contrast, families are geographically morefragmented, and levels of education and individual lifestyles can vary markedly. Members of the care team need to besensitive to these factors for they are more often than not at the root of conflicting points of view that can have a pro-found impact on the decision-making process. Another consideration that can influence how a family conference may playitself out is the nature of the relationship between each member of the family and the patient ...and, also the emotional relation-ship to one another: affectionate, loving or conflictual.

Then there are the dynamics of the care team itself. The interdisciplinary approach taken in palliative care sees a poolingof each member's knowledge and skill, as both clinician and as a communicator. Therefore, self awareness, in terms of acknowledging ones capacity for empathetic communication, is critically important. Patients and families interact differ-ently towards each member of the care team and some may be more comfortable talking with a nurse rather than a phy-sician.

A meaningful outcome to a family conference might be meas-ured in achieving common ground (e.g., acting in the patient'sbest interests) or acknowledging shared goals (e.g., patientcomfort and dignity).

N.B. The lecture on the Family Conference, was videotaped and can be viewedon the CENTRES website together with annotated versions of the author'sPowerPoint presentations (http://www.centres.sg/node/116).

Recommended Reading

Scott AM. 'Managing multiple goals in family discourse about end-of-life health decisions,' Research on Aging, published online 16 May2012.

Schofield P. ''Would you like to talk about your future treatment options?' discussing the transition from curative cancer treatment topalliative care,' Palliative Medicine, 2006;20(4):397-406.

Heyland DK, Dodek P, Rocker G et al. 'What matters most in end-of-life care: perceptions of seriously ill patients and their familymembers?' Canadian Medical Association Journal, 2006;174(5):1-9.






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Kristjanson LJ, Aoun S. 'Palliative care for families:Remembering the hidden patients,' 2004, Canadian Journal of Psychiatry;49(6):359-365.

Robinson CA. '"Our best hope is a cure." Hope in the context of advance care planning.' Palliative & Supportive Care, 2012;10(2):75-82.

Resources

Ashpole BR. 'Initiating a dialogue with family during advanced-illness or dying,' The Pallium Project (2012), Alberta, CANADA.

Jones C, Pegis J, Ashpole BR et al. 'The Palliative Patient:Principles of Treatment,' Cambridge Memorial Hospital, Ontario,CANADA(2000).(http://www.centres.sg/sites/default/files/REF.KNOLL_.palliative.patient (1).pdf )

Jones C, Pegis J, Ashpole BR et al. 'Journeys,' a series of sevenbooklets on the decision to die at home. Cambridge MemorialHospital, Ontario, CANADA (2000).(http://www.centres.sg/sites/default/files/Journeys_Booklet1.pdf )

Advance Care PlanningEffecting positive change in the illnessexperience

In the context of patient-centred care and respect for patient autonomy, advance care planning (ACP) hasbecome in recent years the focus of a great deal of attention and interest – in the public arena, and in the

fields of health care and social services. Promotion of ACP is widespread and in some jurisdictions legislationhas added the weight of the law to enforce, for example,a patient's wishes with regard resuscitation or the refusalof treatment. And, in these challenging economic times,governments view ACP has having the potential topositively effect resource allocation. While the basicconcept is widely endorsed, ACP is not withoutcontroversy.

To the public, the concept of ACP appears relativelystraightforward:

Consider, discuss, and plan ahead in the event thatillness or incapacity deprives you of the ability tocommunicate your wishes regarding personal care,medical treatment or therapeutic intervention.

Name someone to speak on your behalf in the event thatyou can no longer personally communicate your wishes(i.e., appoint a substitute or surrogate decision-maker).

With an ACP in place, health professionals will be able tomake decisions that reflect and respect your personalwishes.

An ACP, however, presupposes: a) a clear and conciseexpression of the patient's wishes; b) making decisionsthat reflect personal beliefs and values; c) a guidedconversation with a health professional; and, d) dialoguewith family and loved ones.

Surveys in many countries suggest that there is relativelyhigh public awareness, understanding and appreciation

of the potential worth of an ACP (or "living will," asperhaps ACP are more widely known). These samesurveys, however, also indicate that few people haveprepared an ACP, let alone taken the time to discusstheir preferences or wishes with anyone or appointed asubstitute or surrogate decision-maker. Facing theprospect of living into old age with a chronic or life-limitingillness or incapacity – a consequence of which is thepotential loss of dignity and independence – seem likelydeterrents; acceptance of one's mortality another.

Discussion about ACP is complicated to a greater orlesser extent by language usage and terminology, andthe general discomfort with the subject, even amongmany health professionals. 'Advance medicaldirectives' (AMD), as an example, is a term widely usedand, in the minds of many people, synonymous with ACP. AMD in some jurisdictions, however, areconsidered treatment specific and, therefore, requireinformed consent. Another complication arises in the notuncommon situation in which wishes expressed inadvance by a patient may change as the illnessexperience progresses or once "in the moment" (e.g.,

when a critical, possibly life-sustaining decision needs tobe made). Currently, several precedent-setting courtcases are being heard that, essentially, pit families andphysicians against one another in deciding who has thefinal authority to authorize, say, resuscitation or thewithholding or withdrawal of life-sustaining treatment.

http://www.centres.sg/sites/default/files/Journeys_Booklet1.pdf







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Discussion

At one level, ACP is intended to ameliorate emotional stress and, at another, to facilitate the decision-making process,effecting positive change in the illness experience. In an ideal situation, the patient will have considered in advance hisor her wishes regarding care in the event of serious or life-threatening illness or incapacity. These wishes would havebeen discussed with, for example, the patient's family physician and also their family. This "process" would then guidethe patient's care plan. In reality, this rarely happens, which raises the question of who should initiate the conversation.

At the present time, physicians are well positioned to discuss patient wishes as an integral part of formulating the careplan which, with the initial conversation, may focus on the short-term (i.e., the immediate course of action). As the healthprofessional-patient-family dialogue unfolds, discussion on how the illness might progress and how the care plan will beadjusted could follow, exploring, perhaps, different scenarios (i.e., 'what ifs'). Certainly, if the patient's condition deterio-rates there needs to be a careful review of the situation and any changes to the care plan clearly communicated.

When questions of withholding information or withholding the truth arise, it is critically important to explain, whether to thepatient or the family, the consequence of either, in particular the challenges these can present as the illness progresses.

N.B. The lecture on the Advance Care Planning, was videotaped and can be viewed on the CENTRES website together with annotated versions of theauthor's PowerPoint presentations (http://www.centres.sg/node/114).

Recommended Reading

Shaw D. 'A direct advance of advance directives,' Bioethics, 2012;26(5):267274.

Winter L. et al. 'Ask a different question, get a different answer: Why living Willsare poor guides to care preferences at the end of life,' Journal of PalliativeMedicine, 2010;13(5):567-572.

Ashpole BR. 'Advance care planning: Discussing future health care and treat-ment options is not an easy topic of conversation,' Canadian Association for Retired Persons, 2009.

Romer AL, Hammes BJ. 'Communication, trust and making choices: Advance care planning four years on.' Innovation in End-of-LifeCare, 2003;5(2):

Robinson CA. '"Our best hope is a cure." Hope in the context of advance care planning.' Palliative & Supportive Care, 2012;10(2):75-82.

Resources

'Guide to Advance Care Planning,' Strategy for Alzheimer Disease & Related Dementias, Ontario Provincial Government, Canada,2002.

Highlights of CENTRES's End-of-life & Palliative Care fortnightly updates

Publications:

1) Foo, AS, Lee, TW and Soh CR. Discrepancies in End-of-life Decisions Between Elderly Patients and Their Named Surrogates

Abstract

Introduction: This study aims to determine the attitudes of Asian elderly patients towards invasive life support measures,

the degree of patient-surrogate concordance in end-of-life decision making, the extent to which patients desire autonomy

over end-of-life medical decisions, the reasons behind patients’ and surrogates’ decisions, and the main factors

influencing patients’ and surrogates’ decision-making processes.






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We hypothesize that there is significant patient-surrogate

discordance in end-of-life decision making in our

community. Materials and Methods: The patient and

surrogate were presented with a hypothetical scenario in

which the patient experienced gradual functional decline

in the community before being admitted for life-

threatening pneumonia.

It was explained that the outcome was likely to be poor even with intensive care and each patient-surrogate pair

was subsequently interviewed separately on their

opinions of extraordinary life support using a

standardised questionnaire. Both parties were blinded to

each other’s replies.

Results: In total, 30 patients and their surrogate decision-

makers were interviewed. Twenty-eight (93.3%) patients

and 20 (66.7%) surrogates rejected intensive care.

Patientsurrogate concurrence was found in 20 pairs

(66.7%). Twenty-four (80.0%) patients desired autonomy

over their decision. The patients’ and surrogates’ top

reasons for rejecting intensive treatment were treatment-related discomfort, poor prognosis and fi nancial cost.

Surrogates’ top reasons for selecting intensive treatment

were the hope of recovery, the need to complete fi nal

tasks and the sanctity of life. Conclusion: The majority of

patients desire autonomy over critical care issues.

Relying on the surrogates’ decisions to initiate treatment

may result in treatment against patients’ wishes in up to

one-third of critically ill elderly patients.

Ann Acad Med Singapore 2012;41:141-53

Access online:http://www.annals.edu.sg/pdf/41VolNo4Apr2012/

V41N4p141.pdf

2) Adams et al.Adaptive Leadership A Novel Approach for Family Decision Making.

Abstract

Family members of intensive care unit (ICU) patientswant to be involved in decision making, but they may notbe best served by being placed in the position of havingto solve problems for which they lack knowledge andskills. This case report presents an exemplar familymeeting in the ICU led by a palliative care specialist, with

discussion about the strategies used to improve thecapacity of the family to make a decision consistent withthe patient’s goals. These strategies are presentedthrough the lens of Adaptive Leadership.

J Palliat Med. 2012 Jun 4

News:

Cnet NewsLast Moment Robot: 'End of life detected' Access: http://news.cnet.com/8301-17938_105-57447109-1/last-moment-robot-end-of-life-detected/

New resource on www.centres.sg

Title: Journeys - A series of seven booklets on dying athome. Booklet 1 - Preparing to Die at Home: Information for the Caregiver

Authors: Patricia Brezden, Kim Davis, Charmaine Jones, Dorothy McGeagh, Lynn M. Nicholls, Donald H. Nicholls, Gloria Nafziger,

Julie Trip.Editor: Barry Ashpole

Contributing Editor: Jessica PegisPublisher: BASF Pharma

Link: http://www.centres.sg/sites/default/files/

Journeys_Booklet1.pdf

Special Thanks to our Contributor:

Mr. Barry Ashpole

Editorial Team:

Prof. Alastair V. Campbell, Editor / CENTRES

Co-Director

Syahirah A. Karim, Assistant Editor / CENTRES

Research Associate

Dr. Jacqueline Chin, CENTRES Co-Director

More information:

[email protected]

©2012 Copyright CENTRES, Centre for

Biomedical Ethics, Yong Loo Lin School of

Medicine, National University of Singapore

Supported By:

http://www.annals.edu.sg/pdf/41VolNo4Apr2012/V41N4p141.pdf



http://news.cnet.com/8301-17938_105-57447109-1/last-moment-robot-end-of-life-detected/



http://www.centres.sg/











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