Ελληνικά ΔοκίμιαVerbal Advance Decisions And Verbal Amendments Nursing Essay
Introduction
The concept of "Advanced Decisions" is well established in modern Health Care. The new Mental Capacity Act (2005) allows you to decide in advance whether you wish doctors to attempt to resuscitate you in the event that your heart fails in hospital. Cardio Pulmonary Resuscitation (CPR) can be a very violent procedure and some patients near the end of their lives, would rather pass away peacefully. These patients can instruct doctors not to attempt resuscitation so they can die with dignity. However, sometimes patients have not explicitly discussed their wishes with the doctors in charge of their care before they are admitted into hospital with heart failure as an emergency. In these cases, it is not clear how patients might convey their wishes to attending doctors as legally enforceable ‘advance decisions’ recognised by the Mental Capacity Act.
The recent phenomena of "Medical Tattoo’s" has gained a great deal of media attention particularly in the UK and US. Figure 1 shows such a tattoo. In this example the individual expresses wishes not to be put on artificial life support. It is appears to be signed, witnessed and dated.
The purpose of this essay to conduct a study to investigate people’s opinions by way of a questionnaire if a similar tattoo pertaining to a Do Not Resuscitate Order is a true reflection of the patient’s wishes and therefore an appropriate form of Advanced Directive.
To fully appreciate the notion of an Advanced Directive a clear definition of MCA needs to be understood. The Act is underpinned by five key principles. (1) Presumption of capacity- every adult has the right to make his or her own decisions and must be assumed to have capacity to do so unless it is proved otherwise. (2) Best interests- on behalf of a person who lacks mental capacity must be done in their best interests. (3) Acting on behalf of a person who lacks capacity must consider whether it is possible to act in a way that would interfere less with the person’s rights and freedoms of action.
In this context, capacity or competence refers to people’s ability to make a decision, which may have legal consequences for the decision maker or for other people. When they have this ability, patients decide for themselves, including deciding what they would like to happen to them in the future. When they lose their mental capacity, that is the trigger for their advance wishes to be considered or for the proxy decision-maker to take over.
In the absence of an advance decision or a proxy to indicate where the patient’s best interests lie, the health team treating the incapacitated individual assess what would be in the person’s "best interests" In order to make an advance decision or appoint their own proxy decision-makers, individuals must have sufficient mental capacity to understand what the process involves and what flows from it. In most cases, there is no doubt about the mental capacity of individuals wishing to record an advance decision as long as they appear to have the everyday ability to make reasoned decisions and understand the likely consequences. People who understand the implications of their choices can state in advance how they wish to be treated if they later suffer loss of mental capacity. Apart from mental health interventions covered by statute, adults when they are competent can refuse medical procedures contemporaneously or in advance. Advance refusals can be legally binding on health care providers. Individuals may also make some requests concerning future treatment they would like or say whether they are willing to participate in research after competence is lost. Such requests or authorisations can help health professionals later to assess what would be in the best interests of the patient. Any advance decision is superseded by a competent contemporaneous decision by the individual concerned, or by the decision of a proxy decision maker who was subsequently appointed to make that decision.
Verbal advance decisions and verbal amendments
If suffering from a condition requiring long-term care, individuals have opportunities for discussion with the health-care team over a long period. They may feel their wishes are sufficiently well known or reflected in the notes so that there is no need to write them down. In hospice or specialist palliative care settings, this form of oral advance directive is common practice. A general expression of views cannot be accorded the same weight as a firm decision but can be helpful in illustrating the patient’s past wishes, even if expressed in a verbal form that would not meet the legal criteria. Nevertheless, there are advantages to recording firm decisions in a written document or on the shared electronic record, when available. Many patients only lose capacity shortly before death. Until the point that capacity is lost, the individual’s current views always outweigh anything they decided earlier. They can verbally amend or withdraw the advance decision as long as they have capacity.
Written advance decisions
Written decisions should use clear language and be signed by the individual and a witness. Although not legally binding, authorising decisions (advance consent) can assist health professionals to accommodate decisions which are so personal that only the individual concerned could make them. A key concern for many people is to be able to say where they would like to be cared for and where they wish to die or who they want called to their bedside. Adults cannot authorise or refuse in advance, procedures which they could not authorise or refuse contemporaneously. They cannot authorise unlawful procedures or insist upon futile or inappropriate treatment. If individuals want to
refuse life-sustaining treatment, they need to say clearly in the advance decision that they are aware that this refusal is likely to result in their death. In England and Wales, this is a legal requirement for validity under the Mental Capacity Act 2005 and such clarity of intention is also advisable in Scotland and Northern Ireland where there is no statute covering this point. Women of child-bearing age might want to consider the possibility of their advance decision being invoked at a time when they are pregnant. Although it is not a requirement, they may wish for the sake of clarity to state what they would want to happen in that event.
Assessing validity
When time permits, efforts should be made to check the validity of any document presented. Basic verification includes checking that a written statement actually belongs to the patient who has been admitted, is dated, signed and witnessed. Emergency treatment should not be delayed in order to look for an advance decision if there is no clear indication that one exists. Nor should emergency measures be delayed if there are real doubts about the validity or applicability of an advance refusal.
In order to assess whether an advance refusal of treatment is valid, health professionals need to consider:
• Whether the current circumstances match those the patient envisaged;
• Whether the decision is relevant to the patient’s current health care needs;
• Whether there is any evidence that the patient had a change of heart while still competent;
• Whether the decision, if old, has been reviewed;
• Whether, since the decision was last updated, new medical developments would have affected the patient’s decision;
• Whether the patient subsequently acted in a manner inconsistent with the decision made in the advance decision or subsequently appointed a proxy decision-maker to make the decision in question.
The advance decision may be invalid if the current situation differs significantly from that which the patient anticipated. As mentioned previously, people who draft an advance refusal knowing that they have a diagnosis likely to result eventually in permanent loss of mental capacity may fail to envisage circumstances in the shorter term where an accident leaves them temporarily unconscious but capable of recovery. Anticipating the former, they may fail to make provision for the latter case, where they would want life-prolonging treatment provided. If a refusal is not applicable to the circumstances, it is not legally binding although it may still give valuable indications of the general treatment options the patient would prefer. If a decision requests or consents to certain options, the health team will have to judge whether the treatment is medically appropriate or advisable for that patient at that time.
Disputes and doubts about validity
In any case of doubt or dispute, legal judgment will be based upon the strength of the evidence. Where there is genuine doubt about the validity of an advance refusal, there should be a presumption in favour of life and emergency treatment provided as it would be for other patients. As mentioned above, health professionals who follow what they reasonably believe to be a valid and applicable advance refusal of life-prolonging treatment are not liable for the consequences of withholding that treatment. But those who knowingly provide treatment in the face of a valid advance refusal may be liable to legal action.
Initially, the clinician in charge of the incompetent patient’s care should consider the available evidence of the patient's former wishes and decide whether there is an advance decision which is valid and applicable to the circumstances. A clearly applicable advance refusal has legal force if the criteria are met and there is no reason to believe it was either retracted or a proxy was appointed to make it. An advance request for positive interventions needs to be considered in the context of the individual’s overall care and treatment options. There may be clinical reasons for not complying with a patient's requests but if it is for life-prolonging treatment, attention needs to be given to the legal issues discussed above in relation to the Burke case. In cases of serious doubt or disagreement about the scope or validity of an advance refusal, emergency treatment should normally be given while legal advice is sought.
In England and Wales, the Court of Protection can make a decision where there is genuine doubt or disagreement but it cannot overturn a valid advance refusal. In Scotland, if there is doubt about whether an advance decision is valid or not, a declaration can be sought from the Court of Session. In Northern Ireland, such a decision needs to be sought from the High Court.
Methods
Convenience sampling and qualitative research methods were used to explore views, attitudes and experiences, amongst Medical, Scientific staff and Lay Person Staff of a private clinical research unit in Central London. Pope & Mays, 1995). A lay person defined as a Non-Scientific and Medical professional.
In most cases each participants completed the questionnaire not in the presence of the investigators, such an action was in part to hopefully reduce any influence bias. All data was transcribed as fully as possible. Data collection (interviews) and data analysis continued concurrently, according to the constant comparison methods of grounded theory in which data are examined for similarities and differences within themes, retaining the context of the discussion and characteristics of the individuals to aid understanding and allow interpretation and development of explanations of findings (Glaser & Strauss, 1967).
Detailed descriptive accounts of emergent themes were produced by the Primary Investigator (PI) and checked by a independent Secondary Investigator (SI). the data were examined for patterns and themes, by contrasting and comparing accounts, noting surprising or puzzling findings for more detailed scrutiny.
The data revealed a number of complex and somewhat confusing themes and so it was decided that detailed case studies would be produced for each respondent describing and charting his attitudes and experiences. These case studies were also checked by JD.
Typologies were also used to examine why certain strategies were adopted by some subjects by tracing conditional paths to track the process of an event (Strauss & Corbin, 1990). The case studies illuminated the various strategies employed by each participant to explain their treatment allocation. In the light of these case studies, all the original transcripts were re-examined to check and verify the concepts and to take account of the context of the data.
The data are presented below within the major themes that emerged from the interviews with quotations to illustrate the findings and allow the reader to judge interpretations. All names and places have been changed to preserve anonymity.
http://orca.cf.ac.uk/10963/1/FeatherstoneTellmestraight2002.pdf
Pope, C., & Mays, N. (1995). Reaching the parts other methods cannot reach: an introduction to qualitative methods in
health and health services research. British Medical Journal, 311, 42–45.
Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. London: Sage Publications
Results
Tabulated data
Summary
Freq
%
Nurse
5
26
Scientist
8
42
Operating Department Practitioner
1
5
Pharmacy Staff
2
11
Doctor
2
11
Lay Person
1
5
Male
7
37
Female
12
63
Age
35
Lower Range
21
Upper Range
60
ALS
5
26
ILS
4
21
BLS
7
37
NONE
1
5
Question
Yes
%
No
%
Unsure
%
Blank
%
2
18
94.74
1
5.26
0
0
0
0
3
5
26.32
14
73.68
0
0
0
0
5
17
89.47
2
10.53
0
0
0
0
6
11
57.89
4
21.05
0
0
0
0
7a
14
73.68
3
15.79
0
0
2
10.53
7b
9
47.37
7
36.84
0
0
3
15.79
7c
9
47.37
8
42.11
0
0
2
10.53
11
5
26.32
13
68.42
1
5.26
0
0
12
5
26.32
13
68.42
1
5.26
0
0
13
11
57.89
6
31.58
0
0
2
10.53
Identified Themes / Responses Frequency
Question 4 What do you understand by the term "Advance Decision"?
Theme
Freq
Subject
Legal document
1
1
Choice
7
19,18,10,9,8,7,2,
Wishes
4
15,11,3
Living will
2
16,6
Question 8 why do you think the tattoo does not convey their advance wishes?
Theme
Freq
Subject
Question mental capacity
1
2
Valid legal document
3
13,11,15
Validity in it self
1
5
Question 10 In what form do you think a patient could convey their advance wishes in the absence of an explicit conversation with the attending doctor?
Theme
Freq
Subject
Legal document
3
1,11,14
Family wishes
1
1
Record / video
2
3,2
Formal document
12
5,7,10,11,12,14,15,16,17,18,19,
Bracelet
1
6
Donor card
2
9,8
Question 11 Would you follow what the patient’s relatives told you about his wishes?
Theme
Freq
Subject
Motives
5
16,13,11,6,4,
Own patient belief
2
5,1
Written proof needed
2
14,7
Follow relatives directives
1
19
Question 12 In the absence of any information regarding their wishes, would you go through a patient’s belongings to see if they had written down their advance wishes?
Theme
Freq
Subject
No time
5
17,16,11,10,2
If time
1
9
Discussion
Pilot Questionnaire – Appendix 1
Dear Andy
The requirement for a legally valid advance decision to refuse treatment such as CPR is set out clearly in the Mental Capacity Act (2005). A tattoo would be unlikely to fulfil the necessary criteria for validity.
Encountering a person with such a tattoo would raise questions that might include whether or not they had capacity when the tattoo was done, whether the current circumstances are those that they envisaged when they commissioned the tattoo, whether they might have changed their mind since the tattoo was done but not yet acted to have it removed or changed etc etc.
Nevertheless the presence of a tattoo of that nature should alert the rescuer to the probability that the person did not wish to have CPR and may have a perfectly valid advance decision that is appropriate to the circumstances, or may have friends or relatives who know of their wishes with regard to CPR and if present would be able to give immediate advice to help the rescuers to reach the appropriate decision in the circumstances.
Our understanding therefore, as was discussed quite widely in the media in relation to the case in Norfolk, is that a tattoo is not a legally binding instruction but may help to draw immediate attention to the person's wishes that have been recorded or communicated elsewhere in a way that does have legal validity and does enable a decision to be made about whether or not to commence or to continue CPR.
The default position in case of doubt is to commence CPR whilst obtaining clarification.
I hope that this helps.
Regards
Sarah Mitchell
Sarah Mitchell
Director
Questionnaire Response
Subject 1
Q
Response
4
Legal Document
9
To a point, I would take consideration but would like legal paperwork to go alongside the tattoo
10
Legal documentation along with family wishes
11
With legal documentation otherwise I would be unsure of the patients personal beliefs
12
For peace of mind and legal reasons but also depends on situation the patient presents in
13
If the DNR form is correctly filled out and in date , I would respect the patient wishes
Subject 2
4
It is a choice about whether to be resuscitated / physiologically supported in the event of possible death or life supported being needed in the future
8
There is nothing to say on this tattoo that the patient requested it when they had mental capacity
9
No
10
There’s should be an integrated records systems so that patient information including wishes, could be checked between healthcare provides.
11
Because it is difficult to establish if the relative is making decisions in the best interest of the patient. Legally, without POA this is difficult.
12
There would not be time in an emergency situation. CPR would have to start ASAP.
13
I have not answered this , as I am unsure whether I would or not
Subject 3
4
Making my wishes clear regarding resuscitation to all medical practitioners if diagnosed with heart failure or any other terminal illness
9
I think the tattoo does convey wishes. I think as well as witnesses the date should be present, tattoos are supposed to be permanent if done when young or before diagnose terminally ill may be questionable
10
Audio or visual recording with witness present stored on mobile phone, time and dated
11
As the patients represented at the time I would first question whether this issue had been discussed
12
I believe every person has the right to decide hey they live and how they die/ time permitting I would do everything I would to find evidence of the patient’s wishes
13
If the medical treatment has caused the heart failure it may be reversible
Subject 4
3
St. Johns Ambulance training
4
A decisions not to resuscitate
9
Like this or blood group
10
Nothing apart from carrying the whole document all the time
11
Cannot take relatives word without seeing the original document
12
Only if pre-notified
13
Patient wish
Subject 5
3
As a magistrate
4
A decision you make in advance of an event
5
The doctor must be satisfied that the advance directive is properly formulated
8
Yes it does not comply their advanced wishes
9
No
10
Formal documentation
11
This is not the directive of the patient
12
A patient who has an advanced directive would present this at the onset of treatment
13
Only if the treatment itself would prevent them from imminent death from the condition itself
Subject 6
4
A living will or other measure means of expressing your wish to not receive artificial life support to be resuscitated
9
Any. A tattoo of a DNR order would show that a person has made a decision in advance to not be resuscitated
10
As a general rule, a bracelet or tattoo or they may have discussed it with their next of kin, closest family members
11
If the patient made a statement which was then contradicted by the relatives then I think you would have to make a judgement. If the patient’s initial wishes were unknown then the impact on quality of life to the next of ki9ns wishes should be considered
12
If there was enough time this would be an option, or if the patients wishes different to the next of kins decision it could help.
13
As part of their informed consent patient should have been made aware of this risk. If they continue to consent to the procedure (no matter how unlikely heart failure) the DNR should stand
Subject 7
4
Giving instructions in advance regarding future treatment
9
Yes
10
Written document, living will
11
I would need instructions either verbally or written from patient
12
Unless explicitly expressed beforehand assume they want treatment
13
If it has been clearly expressed I would follow their wishes
Subject 8
4
Making a decision in advance
9
Yes
10
A donor card
12
That would be the hospital responsibility
13
But this depends on the wordings of the patients advance wishes e.g. "under any circumstances"
Subject 9
4
To make a decision in advance of an evidence of an event
9
Yes
10
Medical bracelet, donor card
11
Just because
12
If there is time beforehand
13
Depends if it clearly states not to resuscitate under any circumstance then no, otherwise yes.
Subject 10
4
Advanced decision is the legal standing of a patient
9
That is not the issue, issue is would you perform resus or not
10
Signed documentation
12
If I was alone No, if lots of people than Yes
13
If a Next Generation Product caused the problem I would start resus
Subject 11
3
Topic discussed during ALS training
4
Written or verbal request to not attempt resuscitation
8
Not a legally valid document
9
It may express their wish but is not legally
10
Advance directive / living will
11
Unless the patient has given direction in advance there is no way to verify that the relatives know what the patient wanted
12
I think you would be unlikely to find an advanced directive in their bag, and if they require resuscitation immediately then there is no time. Best to resuscitate and find a DNR later, then the reverse.
13
Best to resuscitate and find a DNR later, then the reverse.
Subject 12
4
This is an informed consent by patient in advance regards to apply or withhold treatment
6
But the patient after having the tattoo may have changed their mind regards resuscitation so this should be backed up with accompanying recent documentation
7
With accompanying recent documentation
9
I am familiar with DNR being tattooed on a patient, I believe there wishes are inferred by the tattoo but it does question whether they were of sound mind having tattoo and does not show whether patient has changed their mind.
10
Documentation with instructions set out, signed by patient, doctor and witness (significant other)
11
This does depend on the situation, if a patient had terminal cancer then yes. If it was unexpected accident not related to their usual condition then maybe resus should be applied
12
The golden minutes of resuscitation would be lost if the time was spent looking for accompanying documentation.
13
A separate consent would need to be obtained before medical treatment would be given to ensure the most recent wishes of the patient were adhered to.
Subject 13
4
I don’t
8
They are not legal documents so should not be taken literally
9
No
10
A legal document making views known to family doctor so wishes are on file
11
For all you know the patients relatives may not want the person to survive. May ask for their own wishes and not the patients
12
Treat every patient as if they want to survive unless clearly stated and clearly known that they don’t want to.
13
If the patient has made it clear and you know they don’t want to be resuscitate do as they ask.
Subject 14
8
It isn’t legally binding document
9
No
10
A legal document or in the medical notes
11
I would personally want to hear it from the patient either verbally or by a legal document or medical notes
12
I think if they didn’t covey any wishes to you, you shouldn’t go through their belongings. If they felt strongly about their wishes they would say
13
If it was written in their notes to not attempt resuscitation for any reason I would do as requested.
Subject 15
4
When a patient states what wishes they have in advance with regards to resuscitation when mentally incapable of making a decision.
9
Don’t understand the question
10
A form carried around with them at all times
11
Not sure how we would stand legally if wishes coming from relatives
12
Would not feel comfortable doing that
13
Because they had a do not resuscitate in the notes has to be followed as a record of the patient’s wishes.
Subject 16
4
Making a decision about your health and life in advance i.e a will
9
No
10
A will or official document signed by witnesses and the patient
11
They may not be telling the truth and may have a hidden agenda
12
You don’t have time in a life and death situation to search for something that indicates the patient’s wishes. You have to try and save the person’s life, that is the priority
13
Regardless of what causes the heart to fail the outcome is the same.
Subject 17
3
Yes as part of ALS course
4
An advanced decision dictates to medical staff the course of your treatments abd your wishes.
9
It really depends what the tattoo says, if the tattoo instructs someone to do harm to them then no
10
Signed letter to the effect
11
The relatives are not the medical staffs primary concern.
12
No, in a CPR situation there is not time
13
If the patient had consented correctly and the DNR forms were signed than yes.
Subject 18
3
On the ALS Course
4
A conscious decision regards future treatment
8
It may convey patient’s wishes but its not a legal document and therefore cannot be treat as such
9
No it’s not a legal document
10
Written / signed declaration
11
No
12
Depends on the situation
13
If the DNR form was signed then i would respect the patient’s wishes
Subject 19
3
No
4
A decision that is made in advance
9
I think it conveys the persons wishes at all times.
10
Written letter, speaking to the doctor
11
If the patient was unable to speak then the family will speak on the patients behalf
12
Yes
13
Yes, if that is the patient’s wishes