Submission to the Law Reform Commission
On Advance Care Directives
By
The Irish Catholic Bishops’ Consultative Group on Bioethics
The Person and Human Dignity
It is totally in keeping with the dignity of the person that a man or woman should wish to exercise his or her freedom by participating actively in decision making about medical treatment which it is proposed that he or she should undergo.
We note the emphasis on autonomy in the LRC Consultation Paper (cf. # 1.09). Autonomy is to be highly valued, provided it is understood as Kant understood it and as including "due recognition and respect for the rights and freedoms of others and of meeting the just requirements of morality, public order and the general welfare in a democratic society."[1] Freedom is the right to do what is consistent with the truth. It requires, in the first instance, that decisions about the human person take into account the nature and dignity of the person, both the one most directly concerned and any other persons on whom decisions may impinge.
We wish to state at the outset, that human dignity is not dependent on capacity to function, on how we are perceived by others, or indeed on how useful a person may be to society. Dignity derives from who and what we are. A person who is no longer competent to make decisions remains a person and retains all the dignity that is inherent in being a person. Any proposed legal framework for Advance Care Preferences should be phrased in such a way as to avoid a utilitarian valuation of the person.
We are concerned that the term Advance Care Directive suggests a prioritization of any formal statement of advance preferences over the many other important factors which might be involved at the time of decision-making, we would suggest the term ‘Advance Care Preference’ (ACP) for any such formal statement of advance preferences should a person no longer have capacity to participate in specific healthcare decisions.
It is reasonable that a competent person, foreseeing the possibility of not being competent at some future time, might wish to express certain preferences about how he or she might be cared for or treated under those circumstances. This serves, among other things, to ensure in so far as possible that such treatment or care reflects his or her dignity as a person.
It is a well established principle of medical ethics that a patient is morally entitled to refuse any treatment which he or she regards as unduly burdensome. The complexities of the future cannot, however, be easily contained or expressed adequately within the narrow confines of an advance directive. What may appear unduly burdensome in some hypothetical situation, may appear in a different light when the situation is real. Faced with more or less identical situations, two patients may quite morally and reasonably come to opposite conclusions - one regarding the burden of pain, expense, risk etc. as intolerable, the other quite prepared to accept the risk. Scientific or technological advances over time may render certain conditions more treatable and certain treatments less burdensome.
The Person as an Integral Whole
It is fundamental both for healthcare and for morals, and therefore for bioethics, to recognise that the human person is not just a body or a psyche, an intellect or a spirit, but an integral whole. We would argue that much of the apprehension and fear that patients experience in contemplating the prospect of serious illness is due to the perception that, when their disease is no longer responsive to therapy, nothing of any significance can be done to help them. One of the great strengths of a palliative care approach is that it affirms the integral unity of the person and, even when treatment is no longer of any value, it responds to their physical, emotional and spiritual needs.
ACPs do not necessarily improve communication between patients and their families about the sort of care they would wish to have at the end of life. It is arguable that the future resolution of care issues may be better handled in a relationship of trust and beneficence. Palliative care fosters communication and develops trust. Unfortunately there is ample evidence to suggest that not only do unacceptable numbers of people die in hospital with inadequate pain relief, but also that the political impetus to develop adequate universal palliative care is lacking. This requires urgent attention, and no legislation to provide for ACPs will substitute for that.[2]
Decisions about care, whether present or future, are authentic expressions of personal freedom when they are consistent with an integral vision of the human person. They miss the point entirely if they refer only to physical needs and treatments. Likewise they exceed the proper scope of personal freedom if, instead of taking responsibility for life in the context of serious illness – actual or anticipated – they are oriented towards ending life.
Nutrition and Hydration
The distinction between therapy and basic care should be upheld at all times. Nutrition and hydration sustain life in the healthy as well as in those who are sick. Disease or trauma may be the reason why a person is no longer able to eat and drink independently, depends on the help of others to do so or even requires artificial nutrition and hydration (ANH). There is no disease or trauma, however, for which nutrition or hydration, natural or artificial, is prescribed as therapy.
The provision of nutrition and hydration, by whatever means, constitutes basic care and should not be categorised as treatment. There may be legitimate differences of opinion about how nutrition and hydration can be provided under specific circumstances, and this includes the question of whether or not ANH should be initiated when a patient is no longer able to eat or drink even with assistance.
A decision to withdraw ANH is qualitatively and, therefore, ethically different from a decision not to initiate ANH. The withdrawal of ANH with a view to shortening or ending life is a form of euthanasia. The only circumstances in which it is morally legitimate to withdraw life-sustaining ANH is when the harm or distress caused to the patient by ANH is disproportionate to the good achieved, e.g., in the final stages of terminal illness, when the organism can no longer assimilate food or liquid, or when ANH is implicated in serious recurrent infection. It follows that an ACP which required the withdrawal of ANH with a view to shortening or ending life would not be ethical and should not be valid or binding.
Next-of-kin and Proxy
While the autonomy of the patient is to be protected from “professional paternalism,” it must be acknowledged that healthcare professionals have a certain expertise which most patients and their relatives do not possess and it is important that ACPs do not have the effect of preventing healthcare professionals from seeking to use their expertise in the best interests of their patients.
It is appropriate that healthcare professionals would consult with relatives or other people whom the patient may have designated, especially when this may shed some light on the treatment preferences expressed by the patient. We do not believe, however, that it would serve the best interests of non-competent patients or their families if the law were to be amended in such a way that the wishes of next-of-kin in respect of treatment were to be legally binding.
Persons making an ACP should be permitted to appoint a proxy whose role would be to facilitate, at a time when that person is no longer competent, the interpretation of his or her wishes expressed at an earlier time when he or she was competent. The proxy should be entitled to be kept informed by the care team and to make decisions consistent with the expressed wishes of the patient. Notwithstanding the existence of an ACP, healthcare professionals remain personally and professionally responsible for the clinical decisions they make, or fail to make, in the care of their patients and this responsibility cannot be abdicated to the proxy any more than they could be to a competent patient.
In the event that a healthcare professional is unable for reasons of conscience to act in accordance with an ACP, he / she should continue to care for the patient until an alternative arrangement for care is made. It would not be reasonable that a doctor, who decides for reasons of conscience not to follow a particular course of action, should be required to find someone else who will. Some alternative mechanism must be found to arrange for such a transfer of responsibility for care.
It remains to be considered, in the event that advance care preferences were to be recognised in Irish law:
· whether decisions expressed in an ACP be legally binding
· whether the scope of ACPs be limited in any way
· whether they should include preferences for active treatment as well as treatment refusal
On the basis of the vision outlined above we would argue that:
· an ACP should carry significant weight in so far as it refers to certain forms of treatment which a person wishes to exclude (i.e., a negative ACP), but it cannot legally bind a healthcare professional to a course of action or inaction which conflicts with his or her judgement of conscience. Any action of a healthcare professional which conflicts with the terms of an ACP should be noted and explained in writing
· an ACP should not provide for the withdrawal of basic care, including - when deemed necessary - ANH
· an ACP which specifies certain forms of treatment that a person would wish to have under certain circumstances (a positive ACP) should carry significant weight, and serves as a reminder of the quality of care to which every patient is entitled, including particularly those who are no longer in a position to vindicate their right to care. Access to specific forms of treatment is not, however, an absolute right, being subject always to respect for the rights and freedoms of others and to the just requirements of morality, public order and the general welfare in a democratic society.
· an ACP should ideally be recorded and witnessed in writing or in some other permanent form, and discussed with a senior healthcare professional with expertise in the condition(s) specified in the ACP
· it should be clear how many copies of an ACP have been signed and to whom they have been entrusted
· a period of time should be specified after which an ACP must be reviewed, to take account of the patient’s own circumstances and any developments in treatment
· a patient is always entitled to change his or her mind. Current signals and expressions should be taken as the binding new will, in preference to rigid adherence to the previous position expressed in a written ACP
· any copies of an ACP which has been formally revised or revoked should be destroyed
Do Not Resuscitate Orders (DNRs)
The Commission has invited submissions regarding the use of DNRs. There comes a time in the life of every person when death is inevitable. For some people it happens suddenly, but for others it happens gradually and can be foreseen. An order not to resuscitate is ethical and appropriate when it is an expression of the acceptance of natural death. To see it as a way of ending a life which is considered to be of no further value would be completely unethical.
For a patient whose general prognosis is good, CPR would nowadays be regarded as normal medical treatment for cardio-pulmonary failure. CPR is not indicated in the case of a person who is dying. A DNR order, which is sensitively discussed and properly recorded in advance can help to avoid situations in which healthcare professionals experience pressure to use CPR, even when it is not in keeping with the dignity of the patient, because of the fear of litigation by family members.
A DNR order would be appropriate if, taking account of the patient’s overall condition, the burden of CPR would be disproportionate to its expected therapeutic benefits or if CPR would involve an unreasonable burden on the patient, especially a frail, elderly or dying person.
There is some evidence to suggest that healthcare professionals prefer to discuss the status of a patient vis a vis resuscitation with family members rather then with the patient himself or herself. This may reflect concern at the possible emotional impact of such a discussion on a vulnerable patient. Such a practice, however, fails to take account of the right of the competent patient to be involved in decisions which relate to his or her treatment. While the possibility of a DNR should be discussed with family members, it is our understanding that relatives currently have no legal right to make decisions about resuscitation, except in the case of a minor, even when the patient is not competent. Much depends on the capacity of healthcare professionals to communicate in a manner which is sensitive to the emotional state and mental capacity of the patient.
Decisions not to resuscitate
· must be taken by the doctor who has overall responsible for the patient
· as per the BMA/RCN guidelines, should be discussed with the patient, or with next of kin if the patient has not got capacity to participate in the discussion
· must be recorded in writing
· must be communicated to the team caring for the patient, and
· should generally be reviewed on a regular basis, especially if circumstances change