Bernie Corr
ALS/MND
Clinical Nurse Specialist
Beaumont Hospital
Dublin
Ireland
End-of-life decisions and
Advance Care Directives
in ALS/MND:
Background
ALS/MND is a relentlessly progressive neurological disorder
culminating in complete dependence on others for all activities of daily
living. In Ireland one person dies every five days.
ALS/MND has been identified as an illness that is particularly prone to
engendering a sense of helplessness and failure which leads to
feelings of frustration and de-skilling that can result in health-care
professionals avoiding patients. (Skyes 2006 )
The clinical management of ALS/MND is palliative from the time of
diagnosis and is focused on symptom control and adjustment to the
progressive loss of neurological function with the certainty of early
death.
As treatments are limited, inevitable decisions regarding accepting or
forgoing life-sustaining therapies should be made.
The failure to address advance care planning leads to unplanned
interventions, particularly mechanical ventilation. Decisions to
withhold or withdraw life-prolonging treatments are among the most
difficult for patients, carers and health-care professionals.
Aims of the Study
To identify the attitudes, understandings and experiences of patients with
ALS/MND, their carers and their health-care professionals to end-of-life
decisions and advance care directives
To denote the differences and/or similarities between the experiences of
the patients, their carers and their health-care professionals.
This study was funded by the Health Research Board.
Methodology
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A hermeneutic approach, guided by the philosophy of Hans Georg
Gadamer, was the chosen methodology for this study as it illuminates
the meaning and understanding of the lived experience of
contemplating end-of-life decisions and advance care directives for
patients with ALS/MND, their carers and their health-care
professionals
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Purposive sampling was used. The participants selected had
experience pertaining to the phenomena under investigation not just
an opinion
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Participants included patients with ALS/MND their carers and their
health-care professionals, including nurses, Palliative Care
Consultants and Consultant Neurologists
Inclusion and Exclusion Criteria
Inclusion Criteria for patients:
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Possible, Probable or Definite ALS/MND as defined by the El Escorial
Criteria
Patients >18 years of age
Patients diagnosed > twelve months
Patients had a nominated carer
Patients without cognitive impairment
Exclusion Criteria for patients:
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Patients < 18 years
Patients without a nominated carer
Patients diagnosed < 12 months
Patients with cognitive impairment
Inclusion/Exclusion Criteria for carers:
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Carers were identified as the person providing care for the patient
Inclusion and Exclusion Criteria
Inclusion criteria for health-care professionals:
All the health-care professionals had experience of the phenomena under
investigation. In Hermeneutics it is the lived experience that is required
and not just an opinion.
Exclusion criteria for health-care professionals:
Health-care professionals who had no experience of discussing end-oflife issues and advance care directives with ALS/MND patients.
Advance Care Directive
An Advance Care Directive is a statement made by a
competent adult relating to the type and extent of
medical treatment he or she would or would not want to
undergo in the future should he/she be unable to
consent or dissent at that time.
(The Irish Council for Bioethics 2007)
Sample Advance Care Directive
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To my Family, Doctors, Health Care Team and other persons concerned!
Name:
Address:
Date of Birth:
I received a diagnosis of MND/ALS on --------------.
The objective of this Advance Directive is to spare my family, carers and medical advisers the burden of making difficult
decisions on my behalf. I am fully informed regarding diagnosis and prognosis on my MND/ALS. I am also aware of the treatment
options available to me.
Medical Therapy Decisions:
Non-invasive ventilation
Gastrostomy insertion Hydration - Nutrition
Antibiotic treatment
Palliative Care
Cardio-pulmonary- resuscitation
Invasive ventilation
Locus of Care
After careful consideration and discussion with my medical advisors and my family I have freely and in sound mind decided with
the support of my family that:
As my illness progresses I wish my future nursing care and symptom management to be Palliative.
I do not wish to have the following treatment interventions: ----------------I wish to have to have the following treatment interventions: -----------------I am aware that I cannot insist on receiving any particular treatment:
I have discussed this document with my
General Practitioner:
G.P.
Signature:
--------------Address:
Date:
--------------Phone number:
I reserve the right to revoke this directive at any time.
Signature: _________
Witness:
_________
Date:
_________
Date:
_________
Copies of this document are with my GP, solicitor, next of kin and hospital records.
Advance Care Directives
For the patients and carers that participated in this study, contemplating
end-of-life decisions and having advance care directives were profound
undertakings which were approached in a unique and individualized way.
For some patients there are worse things than death: for others long term
invasive ventilation may be their preferred choice.
The realistic medical options and interventions available will determine
and influence these decisions. Johnston 2006 “Advance care planning
should be firmly grounded in the values of the individual who, in turn,
should understand the consequences of the decisions, both for
themselves and their family”.
Advance care directives are increasingly recognised as important tools
for safeguarding autonomy. However, not all patients wish to make
advance care directives and some health-care professionals have
difficulties implementing advance care directives.
Autonomy
“Autonomy is not just a status, but a skill, one that must be developed.
Health-care interactions rely upon assent, rather than upon genuinely autonomous
consent. Throughout most of their medical lives, patients are socialised to be
heteronomous, rather than autonomous.
At the worst possible time – when life and death consequences are attached to the
choices, the paradigm shifts and real consent is sought, even
demanded, making an often traumatic situation even harder.” ( C. Myers 2004).
“While an individual might want to express the right to self-determination, any decision
they make regarding medical treatment will be influenced by the views of third parties,
the individual’s doctor, family or friends”
(Irish Council for Bioethics 2007).
Key findings
An interpretative methodology was used and significant themes central to the
participants emerged to illuminate the research.
Patients/Carers:
Health-Care professionals:
Individualised Impact of Illness
• Living for today
• Loss
• Religiosity
• Burden of Being a Carer
Difficulties Discussing E-of-L Issues
Timing
Who Should Discuss E-of-L Issues
Family Inclusion
Difficulties Discussing E-o-L issues
• Timing
• Consensus within families
Palliative Care
Education
Legal Issues
• Sample Advance Care Directive
• Advance Care Directive
• Burden of Responsibility for
Implementing ACD
Legal Issues
Sample Advance Care Directive
Advance Care Directive
Burden of Responsibility for
Implementing ACD
Participation in Research
Individualised impact of the illness
ALS/MND is a relentlessly progressive fatal illness resulting in a series of
losses. It is characterized by progressive decline in motor function
culminating in complete dependence on others for all activities of daily living.
The impact of ALS/MND is a unique and individualised experience influenced
by how the patient and their carer perceive the changes caused by the illness,
their previous coping mechanisms, the presence of support structures and the
strength of their relationship prior to the diagnosis.
For many patients with ALS/MND the shock of the diagnosis is compounded by
the relentless progression of the illness. They continued to maintain hope
and a positive outlook, considering themselves lucky and blessed and
continued to enjoy and reported having a good quality of life, living for today.
“As one finds meaning in the present, it is possible for life to be experienced as
deeper, richer and more rewarding even while living with physical decline,
realizing one’s finitude, the present time becomes more precious”
(Lambert 2006)
Difficulties discussing end-of-life
issues for patients and their carers
There needs to be an acknowledgement that death, while not imminent, will be the
likely outcome of the illness.
One of the major problems is trying to plan for something
that is abstract: “I live for now... I don’t dwell on it ...I think it’s very good
to plan your dying...and I’m saying you’re dying as from the time you start on,
are on the last hill...I’m on one now but it’s only a slope, but on that last hill,
yes it is useful then”
Patients are requesting that they remain in control and
make decisions about their death, just as they did
throughout their lives.
For some their end-of-life wish is not to die!
Burden of being a
carer
Family caregivers are key figures in ALS/MND care. They usually provide
the bulk of support to patients and play a significant and crucial role in
clinical decision making process.
“The patients are so dependent on their primary caregivers that the couple
represents a unique entity, a psychological dyad whose components cannot be
considered separately”
(Chio et al 2004)
There were concerns and anxieties expressed as advance care directives are not
legal, would there be difficulties implementing them?
Would there be a battle with some health-care professional at the end of a difficult
and painful disease process to have the patient’s wishes respected? “I hope the
end of his life, will not result in an argument with an official”
Burden of responsibility
for Carers
Many of the participants identified the importance of family support throughout
the disease trajectory but highlighted the importance of family consensus
regarding end-of-life decisions and advance care directives. The carers
reported that they had great difficulty discussing end-of-life issues and
feared family recriminations if they supported or participated in the
patients’ decision to request or refuse treatment.
The carers reported their reluctance to revisit E-o-L discussions, once a decision
was made, fearing that revisiting these issues would cause upset or that the
decisions made would be revoked.
Not all patient’s may wish to make ACD and this adds to the burden of
responsibility for their carers.
Difficulties for H-C-P discussing
End-of-Life issues
The difficulty faced by most health-care professionals in initiating end-of-life
discussions with patients with ALS/MND is that there needs to be an
acknowledgement by the patient at some level that death, while not imminent, will
be the likely outcome of the disease progression.
One of the difficulties for H-C-P is to identify the most appropriate time to
initiate end-of-life discussions and the importance of having these discussions
before the patient loses the ability to communicate verbally.
The H-C-P highlighted the importance of knowing the patient, of having a good
rapport, of having a trusting relationship and also the importance of having the
skills to discuss theses issues sensitively and competently .
The H-C-P who participated believed that initiating the discussion, while difficult,
was welcomed by most patients and their families.
Burden of Responsibility
for Health-Care Professionals
The responsibility of ensuring that their patients are fully informed
about the likely disease outcome.
That the patients understand the implications of their decisions. That
they understand that their decisions may influence the treatments they
receive, the services that are available to them and may determine their
place of death.
Many reported the difficulties they encountered in dealing with different
multidisciplinary teams and how the lack of communication and personal
beliefs resulted in patients’ wishes not being respected.
All the health-care professionals agreed that attendance at the ALS/MND clinic
ensured that E-o-L issues and advance care planning would be discussed in a
timely and appropriate manner. However, their concerns emanated from their
experience that although patients had ACD these were not respected in local
hospitals.
Dilemmas
Many health-care professionals believe it appropriate to respect and implement
ACD. However, there are some who feel that life should be preserved at all cost.
An anaesthetist refused to implement the ACD of a patient with ALS/MND stating
that “we don’t polish off patients in the I.T.U. setting”
The I.T.U. nurses who said that “if having a baby you would have an expected
date of delivery, are we now being asked to have an expected date of death”
“When working in an acute setting the philosophy is often guided by technical,
scientific and curative treatments, resulting in difficulties for health-care
professionals switching to the holistic philosophy of palliative care”
Roche-Fahey and Dowling (2008)
Health-care professionals have a right to their autonomy and the right to care for
individuals without abandoning their own integrity. Many may not know the
patient and they may have concerns that the directives may not actually reflect
the current situation.
Palliative Care
All the participants identified the importance of including Palliative Care
services and how vital their skills are in dealing with the complexities of
end-of-life issues.
There continues to be a stigma attached to including Palliative Care.
Patients believe that their “days are numbered” if referred. Health-care
professionals tend to back off, withdrawing their service, believing that if
Palliative Care services are involved, there is nothing left to be done.
Many believed that the palliative care team should be introduced earlier
in the disease trajectory and that their services should be available for
symptom management throughout the illness, not just in the
terminal phase.
Legal Issues
Some of the participants expressed concern that ACD are not legal: they
hoped that legislation would provide clear guidelines and therefore
ensure that they would be respected.
Others believed that even if they are not legal, by presenting an ACD you
are alerting a health-care professional to the expressed wishes of the
patient.
Amongst the health-care professionals that participated, there was
ambivalence regarding the legislation of ACD and a view that a
combination of having a verbal directive and having a nominated proxy
would work very well.
All the participants agreed that their preference was for a disease specific
advance care directive.
Findings of the study
There needs to be improved clinical supervision and ongoing educational
programmes for health-care professionals who are dealing with the very
challenging, emotional and ethical difficulties identified in caring for these
vulnerable patients.
There needs to be improved communication between the tertiary hospital
multidisciplinary teams and the community teams.
An individualised approach is required and end-of-life issues should be discussed
earlier in the disease process and these issues should be initiated by the healthcare professionals.
Referral to the ALS/MND centre of excellence may result in timely and appropriate
end-of-life and advance care discussions taking place.
A sample advance care directive document or a booklet may facilitate discussing
end-of-life issues.
Conclusions
A disease specific advance care directive was deemed more appropriate than the
generic advance care directive proposed by the Law Reform Commission.
There is a need for increased public information and awareness regarding end-of
life decisions and advance care directives whereby it does not have to be a
sentinel event before these issues are discussed.
End-of-life decisions and advance care directives are an extremely important
process that emerges in the context of the patient-healthcare professional
relationship. It involves much more than completion of a formal advance care
directive form or “ticking the box”
The discussion of end-of-life may appear to be fraught with difficult decisions and
ethical challenges. The potential for conflict may lead health-care professionals
to avoid open discussion and advance care planning.
Johnston (2006) “believes that informing and guiding patients and their families
through the decision making process to a peaceful death should be integral to
medical practice”.
Conclusions
This study has illuminated the difficulties and the burden of responsibility faced
by health-care professionals and the carers providing end-of-life care for
patients with ALS/MND.
Patients need to be aware that their autonomy is not absolute, that they cannot
insist on receiving specific, unrealistic or illegal treatment nor can they compel
their attending health-care professionals to act against their conscience.
The difficulty for patients who wish to invoke an advance care directive and have
their end-of-life wishes respected is that they are completely dependent on the
attending Physician or health-care professional to respect and/or implement their
wishes.
Despite a hope that the use of ACD’s would ensure that patients’ preferences for
their end-of-life wishes would be respected this study has illuminated that
the use of ACD’s cannot promise or guarantee the patients a say in their future
care.
Thank You
Many thanks to the patients, their carers and the
health-care professionals who kindly participated in
this research study.