Issue Four

In many societies people define themselves by their religious and cultural grouping, even when their faith or immersion in religion or culture is limited. There are wide variations between people of differing faiths, ethnic backgrounds and national origins and their approach to the end of life. New Zealanders are no exception. This country is inhabited and created by people from a broad range of ethnic and cultural origins. Although four fifths of the population is comprised of people from European descent this does not mean that generalizations can be made in their approaches to the end of life.

Earlier this year two major palliative care conferences highlighted variations in the approach to dying from both the patient’s and professional’s perspective.

The 7^th Congress of the European Association for Palliative Care was held in Palermo, Sicily and was attended by over 2000 people from the countries of Europe and beyond. In May the 4^th Asia Pacific Hospice Conference was held in Taipei, Taiwan and was attended by over 800 people predominantly from the Asia/Pacific region.

Each of these conferences addressed, among other things, the need to be more aware of the breadth of cultural influences on approaches to end of life care.

One point that was repeatedly emphasized was that perhaps the most important task of the professional carer is to ask the patient and family what their needs are. None of us are knowledgeable enough to be able to make assumptions about what individuals needs are – and it is not uncommon to find that those people who are different from ourselves are put into categories, as it seems easier to deal with them if they belong to a group with clearly defined norms. By asking for information and guidance about the appropriate way to proceed opportunity opens up for the patient and family to explore their own understandings and traditions. This can often stimulate a relationship that leads to a level of human understanding that is hard to reach when patient and professional come from the same religious or cultural group where a shared understanding is assumed and not explored.

At the European conference, presentations reinforced the patient’s need to maintain a sense of control that is closely related to a need to seek information.   Papers from Italy, Greece, Germany and the UK outlined that physicians facing this issue are often influenced by their own cultural beliefs. There is evidence to support the view that physicians also differ in their practice depending on the class or cultural origins of the patient. The situation in Asian countries varies also. In China, for example there is often a great pressure from the family for the patient not to be told the truth. In May 2000, the “Hospice and Palliative Care Act” was passed in Taiwan. Prior to this Act, medical law insisted that all people who were dying had to be resuscitated, no matter what the cause of death – the hospital “should try their best to treat”. This was compounded by the fact that the notion of advanced directives or even wills is unknown to many in that country. The passing of the Act will ensure that there will be no repeat of the resuscitation of 100,000 terminally ill people, as it is estimated there was the previous year. Patients and families are more inclined to be actively involved in decision-making than before in many Asian countries. This is assuming that early diagnosis can be made. This is a major problem for some countries where over 50% (Indonesia) to 80% (Thailand) of people presenting with cancer are deemed to be terminally ill with advanced and destructive disease.

Different cultures have different views on nutrition and hydration at the end of life. This was similarly highlighted in both international conferences. In Europe the concept of values-based medicine that balances evidence-based medicine with ethics, has led to the need for further discussion about any conflict of values in stopping life supporting care and treatment. There has been much debate about whether or not hydration and/or feeding should be deemed medical treatment. Societal expectations are variable. In Taiwanese and Chinese cultures naso-gastric feeding, for example, has symbolic meaning and in many hospital settings an intravenous line is seen as   ‘life-line’. Eating and the need for food holds greater significance in these cultures than in many others and it is the family values that are seen to be more important than individual values in many parts of the world.

What these areas of care demonstrate is the constant need for effective and understanding communication between patients, families and carers. In New Zealand, the National Strategy for Palliative Care states that the needs of Māori and Pacific peoples must be met. This will clearly include their cultural and religious needs as well as their physical and psychological needs. However it is also estimated that by the year 2016 the population of people of Asian origin will double to 316,000 (Statistics New Zealand, www.stats.govt.nz ). Their needs, along with other growing populations, will have to be met.

Without the accurate and honest provision of information in the right form, at the right time, there can be little hope of an understanding being reached about the situation the patient and family are facing and the goals of care that are being formulated. Without asking, we cannot know what individuals need to make a difference to the end of their life. That asking must include an acknowledgement of difference – difference in culture, in religious beliefs, in understanding, in expectations and in perceptions for hope at the end of life. Professionals must remain honest and open at all times – truth is like a drug and has its own pharmacology; insufficient doses are ineffective and may harm the patient’s trust in the therapist.

By sharing information within and between cultures we will be better placed to provide the best possible care for people as they approach the end of their lives.

Abstracts from the EAPC Congress can be seen at www.eapcnet.org

Further information may be gained from a popular book (which may soon be updated) that is available from public libraries entitled: The undiscovered country: customs of the cultural and ethnic groups of New Zealand concerning death and dying. New Zealand Department of Health 1986.

______________________

Dr Rod MacLeod is the Medical Director of Mary Potter Hospice, Wellington.

©
2001

The obligation of veracity is the obligation to tell the truth and not to lie or deceive others. Even though veracity is an essential part of the relationship between healthcare professionals and their patients, and an indispensable feature in establishing goals of care at the end of life, many codes of medical ethics frequently ignore rules of veracity and have little or nothing to say about deception and when or whether it is ever justified. The Hippocratic Oath, for example, does not mention this principle. [1] Ethicist, Sissela Bok, in her germinal book, “Lying; Moral Choice in Public and Private Life” suggests the reason why little is said about truth telling in codes of ethics is because, “reasons to lie occur to most people quite often. Not many stop to examine the choices confronting them; existing deceptive practices and competitive stresses can make it difficult not to conform. Guidance is hard to come by, and few are encouraged to consider such choices in schools and colleges or in their working life.” [2] The principle of veracity and its allied virtue of truthfulness are expressions of the fundamental obligations contained in the primary principles of bioethics - respect for autonomy, justice, beneficence (to do the good) and non-maleficence (first do no harm). 

Truth telling is a form of respect for the self as well as for others.   This respect is commonly expressed through the principle of respect for autonomy, which forms the basis for rules of disclosure and consent. Unless a person is adequately informed, an act of consent cannot be an expression of autonomy. Informed consent depends on truthful communication. 

From a bioethical perspective the duty of veracity is understood as flowing from the obligation of fidelity and promise keeping. When a patient-physician relationship is initiated, parties enter into a contract - the patient gains a special right to the truth from the physician, or healthcare professional, regarding diagnosis, procedures, prognosis, etc., while they, in turn, have a right to truthful disclosure from the patient. Lying, the act of “telling another person what one believes to be false in order to deceive that person”, and inadequate or nondisclosure, fail to show respect for persons and their autonomy, violate implicit contracts, and also threaten relationships based on trust.” [3] In the exploration of options and in the giving of truth, what is revealed, held back, or distorted, has a profound effect on the wellbeing of the patient. [4]

In aged care and in the care of the terminally ill a proper understanding of the obligation of veracity is essential if the goal of holistic care is to be achieved. Among other things this means a concentration on mere truth telling is inadequate. Knowing when to tell the truth is as important as knowing how to tell the truth. “Veracity refers to the comprehensiveness, accuracy, and objectivity with which information is handled, as well as the manner in which understanding is fostered in the relationship.” [5] 

The application of the principle of veracity requires the recognition of the “broad spectrum” nature of truth, and, equally, must seek to “meet” the patient at his or her point of need. The following are some principles which may assist both in meeting the needs of the patient at his or her point of need and also expand our understanding of the “broad spectrum” nature of truth.

·         Explore all the options 

A well-established obligation, and one that requires considerable energy in establishing goals of care at the end of life, is to disclose information on alternative options in treatment and care. In the care of the patient choices and possibilities abound regarding the exploration of options. It takes wisdom and skill to strike a balance between giving the patient adequate information and causing him or her unnecessary harm. While some patients are too sick to make the best choices for themselves, most can. This obligation applies just as much to the incompetent patient who has the right to have the options for holistic care explored with their family or caregiver. 

·         Truth telling is a process and must be initiated early. 

To view care for the patient as a relationship based on respect and trust implies that the healthcare professional and patient must establish the process of truth telling early in the relationship. How such a process of dialogue begins and how it is maintained affects not only the mutual exploration of options but also the ending! An analysis of clinical cases, that have become full-blown ethics consults in healthcare institutions, frequently reveals a lack of adequate communication and truth telling between physician and patient. The process of truth telling can be disadvantaged by initially heightened expectations from both parties as well as by what has been said in the opening consultation. Because what has been heard by the patient can differ from what has been said, there is a need for reassurance and review to establish whether of not the patient has understood what has been said. It is helpful to remember that the way questions are framed can determine the answers and set the stage for later discussion.

·         Rise above the family dynamic. 

In establishing goals of care at the end of life, and in the care of the dying in particular, the ethical, psychosocial and spiritual elements of healthcare are interrelated. Nowhere is this more clearly seen than in the patient-family dynamic. Exploring all the options with the patient and his or her family may lead to significant conflict with family members, when the obligation to preserve confidentiality is in direct opposition with the duty of veracity. Conflict can also arise in a dysfunctional family where, even after due process and careful explanation, they are simply unable to give the dying family member emotional or practical support. Nevertheless, the sad reality of a dysfunctional family does not lessen the duty of veracity. 

There may also be times when a family forbids the healthcare team to say anything at all to their family member when there is a poor prognosis. In their view the communication of such information to their family member equates to removing the patient’s sense of hope. When the truth telling process is hindered, by these or similar dynamics, it can be difficult for the healthcare professional to maintain integrity. In striving to rise above the patient/family dynamic, it is helpful for the healthcare professional to recall that the end of life becomes a point of focus for the family and their narrative. Even the most trusted healer only sees a snapshot of that particular narrative. This fact is frequently born out in ethical case review when previously undisclosed information can be introduced to the healthcare team. 

·         Tell the truth with sensitivity 

While the truth may be "brutal" the telling of it should not be. An indispensable factor in veracity, is telling the truth sensitively, as Emily Dickinson beautifully expresses in her poem: 

Tell all the Truth but tell it slant 
Success in Circuit lies
Too bright for our infirm Delight
The Truth’s superb surprise
As Lightning to the Children eased
With explanation kind
The Truth must dazzle gradually
Or every man be blind 

Physician Brian Pollard argues that, while deception “should play no part in the doctor’s dealings” with the terminally ill, this “is not the same as always telling the full truth or telling the truth in an insensitive way.”   Individuals vary in their needs. That is why truth telling must meet the patient’s need at that particular time and according to his or her circumstances. Facts that are irrelevant for this particular patient may be withheld.   “For some, this will be the full truth, if that is what is asked for, while for another, it may be a graded offering of truth which never approaches full disclosure, if that would not be welcome. The cue as to how far one should go will usually be obtained from the patient, if the signs are looked for, as one feels the way gently ahead.” [6] 

·         Begin with cues from the patient. 

The wonderful medieval maxim, “that which is received is received according to the mind [or mode] of the receiver”, reinforces the need for the healthcare professional to begin with cues from the patient. Allowing them to talk and express their concerns helps to nurture a relationship of trust in which the truth can be expressed. In giving relevant information to a patient there is a need to repeat and to reassure in order to enhance the possibilities of understanding. Here the family or caregiver can help. Obviously, the constraints of time and caseload are realities for the healthcare professional and it is not always possible to develop a conversation with the patient at every visit. Nevertheless, the short-term time gains of ignorance are far outweighed by the long-term benefits of knowledge. 

·         Recognize the "truth-telling" windows. 

Just as a skilled clinician is able to recognise a therapeutic “window of opportunity”, in providing care for a critically ill patient, so a wise healthcare professional is able to recognise the window of opportunity in communicating truthfully with the patient. Most competent patients give significant opportunities for this to occur over time. For example, when a patient makes a comment such as, ‘I'm scared’, or ‘I'm afraid’, or ‘I’m worried about my family’, etc. These moments can become moments of breakthrough in the establishing and communication of effective goals of care for the patient at the end of life. As with the administration of effective palliative care, the communication of truth must be “titrated” proportionately, according to emotional and intellectual capability of patient and his or her family/caregiver. If the relationship of trust has not been adequately nurtured then the ability to recognise the “truth telling” window will be diminished. 

·         People can cope with knowledge.

To commit the dying patient to a world of silence, for whatever reason, is to compound his or her suffering. In Leo Tolstoy’s classic, The Death of Ivan Ilych, Ivan Ilych laments the loneliness he feels in having knowledge that he is unable to share. “The deception tortured him – their not wishing to admit what they all knew and what he knew, but wanting to lie to him concerning his terrible condition, and wishing and forcing him to participate in that lie. Those lies – lies enacted over him on the eve of his death and destined to degrade this awful, solemn act to the level of their visitings, their curtains, their sturgeon for dinner – were a terrible agony for Ivan Ilych.” 

·         Truth telling is influenced by cultural and institutional values. 

Closely related to the family dynamic are cultural and institutional values, which also influence the process of truth telling. For example, the cultural value that “anything is possible” does not always provide fertile ground for coming to terms with the reality of limits and the ultimate reality of mortality and death. Similarly, a strong emphasis on curative treatment to the detriment of palliative or holistic care can limit the opportunities for healing and truth telling. 

Truth telling is qualitatively different from other aspects of the patient healthcare professional relationship. Truth telling can rarely, if ever, be achieved in professional isolation. Neither can it be established in fleeting encounters with patient and family. It must be cultivated and supported by the healthcare institution whose role is to nurture a moral culture of listening and compassion through the promotion of values that enhance truth telling. 

[1] Tom Beauchamp and James Childress, Principles of Biomedical Ethics New York: Oxford University Press, 1989: 307.

[2] Sissela Bok, Lying; Moral Choice in Public and Private Life New York: Vintage Books. 1978:xviii.

[3] Beauchamp and Childress, 308-309.

[4] Sissela Bok, 234-240.

[5] Beauchamp and Childress, 310.

[6] Brian Pollard, Euthanasia: Should We Kill the Dying? Bedford: Mount Series Print, 1989:11-12.
____________________

Rev Michael McCabe PhD
Director
The Nathaniel Centre

©
2001

The duty to provide "necessaries of life" plays an important role in regulating professional behaviour in a medical setting. The phrase “necessaries of life” has been especially significant in several ethically complex and high profile cases before the New Zealand Courts. We have asked Dr David Collins, QC, a member of the Panel of Advisors for The Nathaniel Centre to explain its importance and legal significance.

Introduction 

1.    The duty to provide necessaries of life is codified in Section 151 of the Crimes Act 1961.   It provides:

“1.         Every one who has charge of any other person unable, by reason of detention, age, sickness, insanity, or any other cause, to withdraw himself from such charge, and unable to provide himself with the necessaries of life, is (whether such charge is undertaken by him under any contract or is imposed upon him by law or by reason of his unlawful act or otherwise howsoever) under a legal duty to supply that person with the necessaries of life, and is criminally responsible for omitting without lawful excuse to perform such duty if the death of that person is caused or if his life is endangered or his health permanently injured, by such omission.

2.          Every one is liable to imprisonment for a term not exceeding 7 years who, without lawful excuse, neglects the duty specified in this section so that the life of the person under his charge is endangered or his health permanently injured by such neglect.”

2.                   The New Zealand Crimes 1961 can be traced to the Crimes Act 1908 and the Criminal Code Act 1893.  

3.                   The 1893 Act was itself the culmination of a series of reports, draft codes and draft bills prepared in England as far back as 1833.   By far the most influential draft criminal code was compiled in 1878 under the stewardship of Sir James Stephen.   The 1878 “Stephen Code” was never enacted in England but it did form the basis of statutory criminal codes in New Zealand, Canada, and a number of Australian States. The “Stephen Code” analysed and adopted most common law offences and principles, including the duty to provide necessaries of life.

Common Law Duty to Provide Necessaries of Life

4.                   In his text “Digest of Criminal Law” first published in 1877 Sir James Stephen illustrated with three examples the common law duty to provide necessaries of life.   The relevant part of the text reads:

“1.         A, neglects to find proper food and lodging for her servant B, who has a weak mind but is 23 years old.   B’s life is shortened by such neglect. A is criminally responsible if B was in such an infeebled state of body and mind as to be helpless and unable to take care of herself, or was under the dominion and restraint of A, and unable to withdraw herself from A’s control;   otherwise not. [1]

2.                   B, a girl of 18 comes from service to the house of her mother, A, and is there confined of a bastard child.   A does not provide a midwife, in consequence of which B dies.   A is not criminally responsible for this omission. [2]

3.                   A persuades B, an aged and infirm woman, to live in his house, and causes her death by neglecting to supply her properly with food and fire, she being incapable of providing for herself from age and infirmity.   A is criminally responsible for this neglect. [3]

5.                   The second example provided by Sir James Stephen merits careful attention.   The case of R v Shepherd was used to illustrate an instance where no common law criminal offence occurred if a mother failed to obtain midwifery care for her pregnant daughter.   An examination of that case reveals the Crown alleged the defendant was motivated by “a great ill will” and had “purposely neglected to procure a midwife, or other proper person to attend her daughter” in labour.   The mother was convicted of manslaughter by a jury but the conviction set aside on appeal because the deceased “… was beyond the age of childhood, and entirely emancipated”, thereby suggesting that the deceased was able to provide herself with midwifery care.

Medical Necessaries of Life

6.                   A failure to provide medical services has been held to breach section 151 in some circumstances.   Two very distressing New Zealand cases and a Canadian example illustrate this point.

7.                   In R v Moore [4] the New Zealand Court of Appeal upheld a conviction against the equivalent of Section 151(2) Crimes Act 1951 when a woman who had care of a three year old boy failed to get medical attention for the child who was suffering from a large and obvious haematoma on his head.   The child died of other conditions and accordingly the woman was not convicted of manslaughter but was convicted under the equivalent of section 151(2) because the child’s life was endangered by the accused’s inattention to the child’s haematoma.  

8.                   In R v Burney [5]   the New Zealand Court of Appeal upheld convictions against the parents of a young girl who died in appalling circumstances.   The parents failed to get medical attention for their daughter who died after suffering from malnutrition, staphylococcal bronchial pneumonia, anaemia and chronic skin sepsis.  

9.                   In the Canadian case of R v Tutton [6]   the parents of a five year old diabetic boy were convicted of manslaughter after they refused to administer regular injections of insulin.   Their child died from complications arising from diabetic hyperglycaemia.   The failure to provide appropriate medication in that case constituted a breach of the parents’ duty to provide necessaries of life.

Recent Decisions

10.              Careful judicial attention to the meaning of necessaries of life in a medical setting occurred in the Auckland Area Health Board v Attorney General [7] .   That case focussed on the plight of a 59 year old man who was admitted to Auckland Hospital suffering from Guillain-Barré syndrome.   He was transferred to Auckland Hospital’s department of critical care medicine and placed on a ventilator.   He continued to receive artificial ventilation for close to 12 months.   After his admission to hospital the patient continued to deteriorate.   Ultimately he suffered a complete absence of conduction of his nerves and degeneration of his nerve axons.   He was eventually completely denervated and could not communicate.   He was described as being in a “totally locked in and locked out” state.  

11.              Eight months after the patient’s admission the unanimous opinion of four Neurologists and four Intensivists at Auckland Hospital was that the patient’s condition was so severe and so profound he could not recover.   They all believed it was appropriate to withdraw ventilatory support and allow the patient to die.   The patient’s wife and brother (his only family) agreed with the suggestion to withdraw ventilation.   An Ethics Committee of the Auckland Area Health Board (as it was then known) was also consulted.   The Ethics Committee supported the decision to withdraw ventilation.   But what about the legal position?   Would a crime be committed if the patient was taken off the ventilator and allowed to die?   Central to this issue was whether or not the ventilator in this particular case constituted as necessary of life.   Would the doctors breach section 151 of the Crimes Act if they removed the ventilator from the patient knowing that by doing so the patient’s life would soon terminate?   In answering this question the High Court accepted the submission advanced on behalf of the doctors that a ventilator could not be considered a necessary of life if it could not prevent, cure or alleviate the disease or condition which endangered the health of the patient.   Thus the patient’s case could be distinguished from other instances in which the provision of medical assistance had been held to be a necessary of life.   In the previous cases referred to above, medical assistance could have cured, prevented or alleviated the patient of the condition from which they ultimately succumbed.   In the case argued in the Auckland High Court, there was no prospect of recovery.   Maintaining the patient on a ventilator merely prolonged his death.   The Court concluded therefore that the doctors had no duty in this case to continue to provide artificial ventilation and that withdrawal of ventilatory support would not constitute a failure to provide a necessary of life.

Rau Williams Case [8]

12.              During the months of September and October 1997 the New Zealand media focussed on the plight of a 64 year old Northland man, Mr Rau Williams.   Mr Williams came to public notice through most unfortunate circumstances.   In October 1996 Mr Williams was admitted to Whangarei Hospital where he was diagnosed as a diabetic.   Within 2 to 3 days of his admission to hospital he suffered renal failure.   With dialysis he recovered sufficiently from the acute phase of renal failure so as to be able to return home.   On 20 June 1997 he was re-admitted to Whangarei Hospital where his condition was diagnosed as chronic end stage renal failure.   The only treatment which would assist Mr Williams was a renal transplant.   Due to limited supply of donor kidneys it could take up to 7 years to carry out a transplant.   Patients considered suitable for a transplant are treated by dialysis pending the obtaining of a suitable organ.   Mr Williams’ suitability for acceptance onto dialysis treatment was assessed. On 3 September 1997 North Health wrote to Mr Shortland, the nephew of Mr Williams and a family spokesman and advised that Mr Williams was not eligible for the renal replacement programme and that the Hospital would discontinue interim dialysis treatment on 17 September 1997.   Proceedings were issued in the Whangarei High Court by Mr Shortland.   Applications to judicially review North Health failed in the High Court.   Following the High Court proceedings, an appeal was filed in the Court of Appeal.   Two grounds of appeal were advanced in the Court of Appeal.   The first was that the actions of North Health were arguably unlawful and that the failure to provide dialysis treatment constituted a breach of the duty which rested with the Hospital to provide necessaries of life.   The second ground, which will not be discussed in this paper, argued Mr Williams’ right to life as codified by Section 8 of the New Zealand Bill of Rights Act 1990 was breached by his exclusion from the dialysis programme.

13.              The submission that North Health Limited might be breaching the duty to provide necessaries of life for Mr Williams was based upon an analysis of Auckland Area Health Board v Attorney General.   In that decision, the High Court stated that doctors would have a lawful excuse to remove ventilatory support if the decision was in accordance with good medical practice.   The High Court explained “good medical practice” so as to establish a “lawful excuse” to remove the necessaries of life in terms of Section 151 would be satisfied if four conditions were met;   namely:

•                    That the decision to withdraw life support systems was made in good faith and in the best interests of the patient;
•                    That the decision conformed with prevailing medical standards;
•                    That the decision was made in consultation with a recognised ethical body;
•                    The family of the patient gave their fully informed consent to the proposal.

14.              The argument in the Court of Appeal concentrated on the last three criteria identified in the Auckland Area Health Board case.   The Court of Appeal determined that in the case of Mr Williams the decision to withdraw life support systems was made in good faith and conformed with prevailing medical standards.   Although there had been no attempt made to obtain consent from a recognised ethical body and the family did not give their informed consent to the proposal to remove Mr Williams from dialysis, the Court of Appeal said these obligations were not mandatory.  

15.              It is to be emphasised that the analysis conducted by the Court of the Appeal of the judgment in Auckland Area Health Board v Attorney General focused solely on whether or not the doctors charged with the care of Mr Williams had a lawful duty for not providing necessaries of life.   There was no argument before the Court of Appeal, and no discussion in the judgment as to whether or not the dialysis machine was in fact a necessary of life.   The argument under Section 151 simply dealt with the issue of whether or not the actions of North Health in excluding Mr Williams from dialysis constituted a lawful excuse for not providing a necessary of life.

16.              There could be little doubt that the dialysis machine was a necessary of life.   The evidence before the Court was that without dialysis Mr Williams would soon die.   With dialysis his life would be prolonged.   The fatal effects of end stage renal failure would have been alleviated, albeit for an arguably short duration.   The quality of Mr Williams’ prolonged life may not have been entirely satisfactory, but, on the basis of the evidence before the Court, it was a life he wished to live.   Prolonging the life which the patient wishes to live is a legitimate goal of medicine.   Mr Williams’ circumstances were vastly different from the patient in Auckland Area Health Board v Attorney General.   The ventilator in that case could not alleviate the effects of Guillain-Barré syndrome from which the patient quickly died when the ventilator was disconnected.   Mr Williams, on the other hand, could have had the fatal effects of end stage renal failure prolonged for several months, during which time he would have had a quality of life that he was (according to the evidence) willing to accept.  

Conclusion

17.              Section 151 Crimes Act 1961 provides a rare illustration of how, in some circumstances, omissions can result in criminal liability.   Traditionally the criminal law endeavours to draw a distinction between acts and omissions.   This distinction is based on the supposition that intentionally doing something is more culpable than allowing something to happen without interference.

18.              It is the traditional distinction between omissions and commissions that caused the House of Lords to describe the withdrawal of nasogastric feeding from Antony Bland [9]   as an omission rather than an act.   It is quite apparent however that the commission/omission dichotomy cannot be easily applied to the medical scene.   The general proposition that people have limited duties to save others is not helpful in the medical domain because health professionals are under a duty to use their skills, so far as is reasonable, for the benefit of their patients.   This overriding duty of care must eclipse any artificial distinctions that the criminal law may try to make between acts and omissions.   

19.              The duty to provide necessaries of life continues to play a role in regulating professional behaviour in a medical setting.   On 6 August 2001 a Christchurch medical practitioner pleaded guilty to failing to provide necessaries of life when a patient undergoing cosmetic surgery died in most unfortunate circumstances.  

20.              The cases analysed in the preceding paragraphs illustrate that the law will impose criminal liability on health professionals and others who have responsibility for the care of incapacitated persons if they fail to provide those in their care with medical treatment and services which could cure, alleviate or prevent a deterioration in health.   This area of the law had a most unpromising start.   If the facts of R v Shepherd were to arise today, there is every likelihood that the mother who neglected to get the assistance of a midwife for her daughter in labour would not be treated as leniently as she was.   The case is now only of historical interest and is perhaps a striking illustration of indefensible Victorian standards.

[1]        R v Charlotte Smith (1865) L&C 607

[2]        R v Shepherd (1862) L&C 147

[3]        R v Marriott (1838) 8 C&P 425

[4]        [1954] NZLR 893

[5]        [1958] NZLR 745

[6]        (1989) 48 C.C C. (3d) 1299

[7]        [1993] 1 NZLR 235

[8]     Shortland v North Health [1998] 1 NZLR 433

[9]        [1993] 1 All ER 821
_________________________

Dr David Collins, QC

©
2001

One of the themes frequently heard from hospice team members and from those who work in aged-care facilities concerns the constraints placed upon their work of compassion. 

Some of these constraints are systemic and flow from the nature of healthcare delivery, while others come from further afield or from within the healthcare professional. Constraints may come from the endless paperwork and bureaucratic negotiations needed to secure adequate funding for healthcare delivery. For example, how does a hospice or aged-care facility maintain an overarching value of compassion and welcome in the face of very strict criteria for the acceptance or the non-acceptance of a particular patient? What do such criteria do to the philosophy and standard of care? Time spent on necessary administration can in fact seem far removed from the call to compassion. Then again, these institutions may have to face the very real constraint of donor fatigue – the eroding of financial support from established donors who cry “enough” when confronted by one more worthwhile cause in a tapestry of social needs.   Do financial constraints impact adversely on the quality of the healing partnerships that are at the heart of hospice and aged care? Do financial constraints actually shorten the continuum of care that can be offered by healthcare workers or healthcare institutions? 

Often these constraints come from within staff dynamics or from within the patients themselves or from within the healthcare professional. What impact, for example, does professional burnout have on compassion? The overfull calendar can easily become the constraint of busy-ness by another name. These and similar pressures can constrain the virtue of compassion. 

It takes great skill to be present totally no matter what the constraint. It also takes great skill and compassion to rise above institutional, patient, and family dynamics in order to provide compassionate care. 

During the 1980s I was a member of the Mary Potter Hospice chaplaincy team. During that time I recall meeting Kathleen. I well remember the day she died. That day had been a little quieter at the hospital and hospice leaving time to catch one’s breath… with a short visit to the patients, and the celebration of evening mass for the sisters, the day would be free. 

I always had a feeling of getting nowhere with Kathleen – she was more than a little sad and neither my brashness nor charm seemed able to pierce the all-pervading cloud of disappointment that she lived in. 

“How are you feeling tonight Kathleen?” Nothing. I moved closer to the bed, “Have you had a good day?” “I’m dying!” 

Her reply so stunned me that my reply was both inelegant and clumsy... “Does that worry you Kathleen... I mean are you feeling peaceful about it?” 

Again the response came from the depths of her soul, “It is what I deserve!” Desperately trying to reassure her, I half-shouted back at her, “No Kathleen! No one deserves to die!” 

She would not be put off, “But I do! I have been married twice, divorced twice. I just lived with my last partner – couldn’t face trying again. We drank our lives, our money, our families away – and now I’m dying – it is what I deserve!” 

I wanted to hug all the pain out of her. How sad to come to the end of three score and ten years and view death as a punishment for the twists and turns taken in the road. 

“We need to talk about this Kathleen, and we will, but right now I have mass to celebrate. I will offer it for you and with you and then I will pop back and we can talk…” 

“Well, if you like, but I don’t know if I’ll be there – can you hear my confession?” 

“Sure…” 

I was a little late for mass but upon returning to Kathleen’s room I had no regrets. She had already begun to lose consciousness, but was still very agitated – not in physical pain, but greatly distressed and very afraid. There was no time for talking now – Kathleen was beginning her final walk towards God. I knew that the sacraments of reconciliation and anointing had brought her peace with God, but I felt powerless in the face of her distress. 

All I could think of was to dampen a face cloth with cold water in order to relieve her fever. As I was soothing her brow I began to reflect on the position of trust I was in. The nurses were busy with the evening drug round and were happy someone was with Kathleen. The appalling and frightening thought flashed through my mind that it would be so easy to smother her, to put an end to her distress, and an end to my feeling of hopelessness and helplessness. After all who would know? 

Only me – I would know! I began to think of her story – her wanderings, her search for love, acceptance, and security…. I wasn’t sure where her story ended and mine began. Perhaps I was guilty of projection that night, but it seemed to me that what she needed, what she had been searching for on the road, was someone to say, I understand, I accept you as you are, and I gently invite you to grow, to make the journey within, to discover God’s presence, to discover your story belongs in the God story, to realise that your story, as it is, as it has been, can be the pathway to discovering mercy, forgiveness, compassion, hope, love…. 

As I wiped her brow I began to recite phrases from Isaiah, “Do not be afraid, for I have redeemed you: I have called you by your name, you are mine. Should you pass through the sea, I will be with you… you are precious in my eyes…and I love you… Do not be afraid, for I am with you… When your hair is grey I shall still support you…” In between, I prayed, “Holy Mary, Mother of God, pray for us sinners, now, and at the hour of our death...” 

In the reciting of the Word with Kathleen, I witnessed peace descend into the very recesses of her heart. She became transfigured into peace and serenity and when she died a couple of hours later I knew she was meeting God in a wholly new way - in such a profound way that I could not even begin to comprehend. Death became for her the moment of complete relaxation, integration, and healing – a moment in which she and I understood that death is not what we deserve, but the very gateway into God and into eternal life. 

The experience of being with Kathleen that night, and so many like her during my three years in chaplaincy at Wellington Hospital and the Mary Potter Hospice, left a profound effect upon me. I saw so powerfully the hand of God at work in peoples’ lives - from birth, right up to, and including, the moment of death. It was also the first time I understood, in a thoroughly grounded way, the perspective of those who favour euthanasia or physician assisted suicide. The realisation that the case for physician assisted suicide was so complex was a very sobering feeling indeed for me. It meant I had to confront many of the issues that such a case raised. I had once naively thought that my Christian faith would protect me from such issues! 

To accept physician assisted suicide as an option is to place a constraint upon our compassion. It is to say, in effect, “your journey is too difficult for you to face… and it is too difficult for me to accompany you on…” What I learnt that night from Kathleen was although her journey was undoubtedly difficult, both of us could find healing from the completed journey. 

The virtuous care of the dying and the elderly provides a countercultural model to the false compassion of physician assisted suicide. Such virtuous care is the antithesis of abandoning the patient who suffers. Euthanasia is a false compassion because it uses the complexities and difficulties of the dying process as reasons for withdrawing a healing presence from the one who suffers. 

Compassion does not yield to constraints. It puts them into a larger picture by creating a sacred space despite them. In doing this compassion goes beyond constraint to a place of virtue where myriad stories and the twists and turns of the journey can all belong. That is the irony of compassion. It brings healing to the one in need, but also strengthens the one who is compassionate. Equally, acts of compassion strengthen the community.  

In his Apostolic Letter on Human Suffering, Salvifici Doloris, Pope John Paul II writes: “The parable of the Good Samaritan belongs to the Gospel of suffering. For it indicates what the relationship of each of us must be towards our suffering neighbour. We are not allowed to ‘pass by on the other side’ indifferently; we must ‘stop’ beside him. Everyone who stops beside the suffering of another person, whatever form it may take, is a Good Samaritan. This stopping does not mean curiosity but availability. It is like the opening of a certain interior disposition of the heart, which also has an emotional expression of its own…” [1] 

An essential ingredient of compassion is availability. Physical presence is a part of our availability but of even greater importance is our interior availability.   Most constraints on compassion are, in fact, from within ourselves. For example, in tending to the patient’s physical needs we may be closed to the deeper concerns of the patient. Our bright and cheery manner could be another way of preventing the deeper discussion. Then again, we may not have the interior resources to be available at this particular time and to this particular person. That is why teamwork is essential. A coherent team enhances the virtue of compassion in action while nurturing the caregiver at the same time. Teamwork allows particular team-members to have interior space when it is required. 

Hospices and aged-care facilities have always faced constraints – constraints from within and constraints from further afield.   Nevertheless, many have become icons of compassion in New Zealand because they have tried to meet patients and their families and carers at their point of need. Good facilities for the aged or dying embody a moral community of care – one that is specifically shaped by a compassionate paradigm of caring over curing. Such a paradigm neither hastens death when a person’s condition has become onerous, nor does it prolong dying in order to preserve life at all costs. 

Often our compassion becomes the only means for people at the end of life to discover the very face of God. If not us – then who? 

[1] Pope John Paul II,   “On the Christian Meaning of Human Suffering” “Salvifici Doloris” n. 28. Vatican City: Vatican Polyglot Press, 1984: 64.

Rev Michael McCabe, PhD
Director
The Nathaniel Centre

©
2001

The Royal Commission on Genetic Modification has recommended that New Zealand should “preserve its opportunities and keep its options open” and that “it would be unwise to turn our back on the potential advantages on offer, but we should proceed carefully, minimizing and managing risks.” 

The approach taken by the Royal Commission could be described as a “Via Media”, that is, a middle way, the path of wisdom and balance. This approach reflects that taken by the Catholic Bishops’ Conference in their submission to the Commission. The Report shows that balancing individual rights and interests with the greater good of society is no easy task, especially with regard to agriculture and horticulture. 

The Commission’s Ethical Approach
·         In addressing the question of ethics the Commission identified the complexity of the cultural, spiritual, and ethical issues arising in the GM and biotechnology area.
·         The difficulty of linking cultural ethical and spiritual values with the making of specific decisions.
·         The question as to whether New Zealanders have common core values. 

The Royal Commission see values as arising from a person’s “world view”. They identified three types of world view in the submissions they received.

·         The traditional Māori world view
·         The ecological world view
·         World views from the Judeo-Christian tradition

From these world views they have derived seven “core values” which they believe are shared by many New Zealanders and are relevant to a consideration of genetic modification:

·         The uniqueness of Aotearoa New Zealand
·         The uniqueness of our cultural heritage
·         Sustainability
·         Being part of a global family
·         The well-being of all
·         Freedom of choice
·         Participation

They note that “people draw their values from different sources and yet also hold values in common.” In our view these core values will have relevance for other biotechnological debates in the future.

Ethical Decision Making 
When these core values are set within an ethical framework then the spiritual, ethical and cultural dimensions of GM can be adequately considered in a way that maximises the benefits of GM while minimising its harms. The Commission’s Report describes two approaches to decision making - a Pakeha and a Māori approach. 

In the Pakeha approach they identified four key elements in the ethical decision-making process:
·         A clear statement of the values to be used as criteria [our common core]
·         Full information on the specific data relating to the case to be decided 
·         A holistic approach that looks at both the data and the values in a connected manner
·         Appropriate participation by stakeholders [or with an interest] in the decision making process

In the Māori approach to decision-making no distinction is made between the process and the outcome. Consensus is preferred even if it takes time. Emotion is expected, vented and tolerated and reconciliation is part of reaching consensus. When there are difficulties in both reconciliation and in reaching consensus the subject of discussion will be left to provide time and space for people to think about a solution. From the perspective of Māori, ethical decisions are reached at the meeting point of the spiritual and natural worlds. In the Pakeha approach ethical decisions arise at the conjunction of values with the specifics of a particular situation. 

Moving Ahead Together 
There is common ground in the two approaches because values flow from spirituality while the specifics of a situation are located within the material dimension. The Commission sees this commonality as representing a ‘shared way ahead’ in which the combining of core values with a situational context lead to an ethical decision. 

As a means of dealing with the complexity of the issues the Commission has recommended that some decisions should be taken at a higher level which takes account of the values held by New Zealanders. To this end it has recommended the establishment of Toi te Taiao - The Bioethics Council. This Council will consider the ethical, spiritual and cultural dimensions of genetic modification that cannot be addressed adequately in the course of the case-by-case decisions of regulatory bodies. The Commission sees the Council as being “a vital forum where issues of national significance are addressed, and appropriate guidelines formulated supporting practical outcomes.” 

The Bioethics Council would be required to involve the public in the consideration of major ethical issues. They have recommended that the membership should be selected to ensure that the Council is credible, expert and independent. They have rejected “stakeholder” representation in favour of broad-based representation, with effective Māori participation being essential.

The Commission has also recommended the establishment of a Commissioner on Biotechnology who would audit the bodies charged with decision making in biotechnology as well as watching the interaction between new technologies and society and all issues to do with the application of biotechnology in New Zealand. The future watch and oversight of the Parliamentary Commissioner is essential. When combined with the role of the Bioethics Council we may begin to see the development of good dialogue between the biotechnology community and wider society. 

The Principle of Autonomy 
In the oral submission of the Catholic Bishops’ Conference it was stressed that one of the most challenging aspects of developing an ethical framework for genetic modification would be the application of the principle of respect for autonomy. They noted that, “In relation to genetic modification the teasing out of respect for autonomy requires a commitment to dialogue, with a multidisciplinary and multicultural approach being essential. Such a dialogue challenges all groups engaged in the debate to stand in the shoes of others rather than simply dismissing perspectives which differ from their own.” 

Certain groups in the GM debate have viewed the Commission as an arbitrator who would hand down very specific recommendations in the particularly contentious areas of agriculture and horticulture. Instead the Commission has chosen to allow field release of genetically modified crops with a strict regulatory and control process. It has also instructed the different agricultural groups to work with the Ministry of Agriculture and Forestry to develop an industry code of practice to ensure effective separation distances between genetically modified and unmodified crops. The dialogue process involved in developing codes of practice will be a healthy development, and if it is conducted with good will, potentially be a means of reversing the process of polarisation that has characterised this debate. 

We recognise that not everyone will be in favour of the Royal Commission’s recommendations. New Zealanders agreed on the Royal Commission as a process to move us beyond the paralysis created by polarisation. The Commissioners are the only group of people to have heard all sides of the debate, as well as doing their own research and investigation. We entrusted the resolution of society’s polarisation to them. They have recommended a way forward which provides for strict controls on genetic modification as well as allowing some freedom for New Zealand to benefit from the technology. The Government must now decide how to translate their recommendations into action. 

________________

Anne Dickinson and Michael McCabe

©
2001

Ethics & Medics
This monthly publication of the US National Catholic Bioethics Center provides a Catholic perspective on moral issues in the health and life sciences.   In each issue, it states that “Ethics & Medics makes every effort to publish articles consonant with the Magisterial teachings of the Catholic Church”.

The bulletin is really just that – four sides of A4 sized paper, usually containing two articles on related subjects. The topics are ones that Catholics involved in health care would find useful in guiding them in their practice.   These include articles on tube feeding, living wills, and induced delivery and foetal anomalies. For the Catholic layperson, there are also articles on family planning, parenthood and marriage. Then there are more thematic articles on the principles underlying the Catholic health care system and on Catholic bioethics.   Finally the bulletin addresses such issues as embryonic stem cell research, abortion and the determination of brain death.   The articles are relatively brief, easily understood and of course, consistent with the teachings of the church.

Journal of Medicine and Philosophy
This journal, published six times a year, is described as a forum for bioethics and the philosophy of medicine. It is sponsored by the Center for Medical Ethics and Health Policy, a joint project of Baylor College of Medicine and Rice University. The majority of the issues are thematic with recent issues including “Issues in Clinical Ethics”, “Do Children get their fair Share of Health and Dental Care?” and “Ambiguities in European Bioethics”.

The journal explores shared themes and concerns of philosophy as its scope explains that central issues in medical research and practice have important philosophical dimensions, because in treating disease and promoting health, medicine involves presuppositions about human goals and values. Conversely, the concerns of philosophy often significantly relate to those of medicine, as philosophers seek to apprehend the nature of knowledge and the human condition in the modern world.   As might be expected, the articles are philosophical in nature and lengthy as they explore topics in depth.   The reader is aided by a helpful abstract at the beginning of each article.

Kennedy Institute of Ethics Journal  
This is the quarterly journal of the Joseph and Rose Kennedy Institute of Ethics, Georgetown University, a teaching and research centre offering ethical perspectives on major policy issues.

The Kennedy Institute of Ethics Journal offers a forum for diverse views on major issues in bioethics, such as the feminist perspective in bioethics, active euthanasia, genetics, health care reform, and organ transplantation. The range of articles also extends from such topics as “In light of Splendour; Veritatis Splendor and Moral Theology” to “Method in Catholic Bioethics”.   The articles in each issue are usually related to the same theme and from time to time, the journal has a special issue, with themes including “Medicine Laid Open” and “Aristotelianism in Contemporary Bioethics”. 

Each issue includes Scope Notes, an overview and extensive annotated bibliography on a specific topic in bioethics.   While the Scope notes often relate to Bioethics resources, there are also specialised notes on topics such as “Animals in research and Education” and “Genes, Patents and Bioethics”.   The notes give a useful overview of the topic, including its history and its legislative framework, as well source material.
___________________

Sharron Cole is Chair of the Wellington Ethics Committee and the ACC Medical Misadventure Advisory Committee, and a member of the Medical Practitioners’ Disciplinary Committee.

1/8/2001