Issue Fourteen

San Lazaro Hospital is a 600-bed infectious diseases hospital in a poor area of Manila. It deals with people who have diseases such as rabies, measles, tetanus, tuberculosis and AIDS. The hospital is under-funded and struggles to provide care for people who are themselves poor. The life-threatening nature of many of the diseases affecting San Lazaro patients means that there are many deaths in the hospital. 

In 2000 Dr Pearla Albans, head of the hospital’s HIV/AIDS unit, attended a WHO training programme in Australia. As part of the programme the participants were introduced to palliative care by Larri Hayhurst, a palliative care educator from Sydney. Dr Albans immediately saw the relevance of palliative care for San Lazaro Hospital, and Larri was invited to the Philippines. Her visit resulted in a formal invitation from San Lazaro’s Medical Centre Chief, Dr Benito Arca, to introduce a palliative care education programme in the hospital.

Dr Arca had long wanted to improve the care of dying patients at San Lazaro. When asked what his vision was for them he replied: “I want every dying patient in this hospital to die in the arms of a loved one”. His vision encompassed introducing the principles and practice of palliative care to all staff in the hospital, with San Lazaro eventually acting as a training centre for other hospitals. In Larri Hayhurst he found the first member of a small team who would help make his vision a reality.

Larri Hayhurst invited Sydney palliative care specialist Dr Sue Marsden to join her in working at San Lazaro. In November 2000, Auckland psychotherapist Liese Groot went to Sydney to conduct seminars for Sacred Heart Hospice. There she met Larri, who invited her to become the third member of the team. Liese is a palliative care educator, who for ten years worked with and for Elisabeth Kubler- Ross, conducting seminars on grief, loss and palliative care in the USA, Europe, Africa, Australia and New Zealand. 

The scene was set for the beginning of a remarkable programme which was to change the culture of a hospital, and the lives – and deaths – of many people. 

The Starfish Palliative Care Programme, as it came to be known, aims to educate staff members from different parts of San Lazaro Hospital in palliative care. Four-day workshops in “Basic Palliative Care” are the starting point for staff willing to be involved, together with courses covering symptom control in palliative care, and courses which help staff to improve their communication with dying patients.

The high stress situations in which staff worked soon made apparent the need for a Self-Care Course for those who were dealing with many dying patients. For example, on one day when the palliative care course began at 8am, a nurse came to the course from the TB ward where there had been five deaths since her shift began at 7am. The level of “carer pain” and grief overload is high, compounded by the fact that staff can not always provide the medication patients need due to the hospital’s funding difficulties. 

Early in the programme a Core Group of San Lazaro staff members was established, made up of doctors, nurses, chaplains and a counselor. The group receives intensive teaching when Larri, Liese and Sue visit to conduct workshops, as the Core Group will be the long term resource for their colleagues. The workload of the Core Group is high, as their participation is in addition to their duties in an understaffed hospital.   Their dedication, passion and knowledge will ultimately make the palliative care programme sustainable when the Australian and New Zealand input finishes in 2006.

As well as conducting workshops, the palliative care team worked with staff in wards to introduce the practicalities of palliative care. Initially Larri had worked with the staff of the HIV/AIDS unit at the hospital, and the plan was for the team to also work in this area, introducing palliative care practices and building up a team of staff who could teach others. However hospital staff were particularly concerned with the plight of the patients in the rabies ward, and the decision was made to begin by introducing palliative care in one of the most difficult clinical areas in the hospital. 

There are on average two deaths per week in the rabies ward at San Lazaro Hospital. If a person is bitten by an animal with rabies they have a short period of time in which injections of a rabies vaccine will be effective in preventing the development of the disease. There are queues of people at Manila hospitals waiting to receive the vaccine after they have been bitten by one of the many types of animals which carry rabies. These people are the lucky ones – many children and adults do not realize they have been bitten by a rabid animal. Animals are infectious before they exhibit symptoms, so the danger may not be obvious. The symptoms of rabies take two weeks or more to appear, and once they do, death inevitably follows a few days later. Patients suffer a violent death in a state of psychotic terror of air and water, afflicted by painful spasms. 

A person showing the first signs of rabies is brought to San Lazaro Hospital by several people wearing padded protective clothing. When the palliative care team began work with the staff of the rabies ward, they found that it was standard practice to tie the patients to the bed, with their arms above their heads, because they were violent as well as infectious. There were no sheets on the beds, no blinds on the windows to keep out the heat of the sun, and the patient remained in the street clothes they were wearing when they arrived in the ward. 

Valium was being used unsuccessfully to control the symptoms, and the dying patient spent most of the time alone. Doctors and nurses were frightened to have physical contact with patients in case they were bitten or spat upon, as staff are not vaccinated against rabies due to lack of funds. There was no furniture provided for family members to enable them to sit with their dying relative.

The rabies treatment protocol was set down in a policy written by the Philippines Department of Health. The palliative care team found that changing the protocol was no easy matter. Staff believed it was impossible to control the psychotic symptoms, and little professional nursing care was given to the patients because of the fear of infection. It was also difficult to do much for patients when they were tied to a bed.

The team worked with staff to bring about small changes, such as putting sheets on the bed and blinds on the windows. Instead of having both arms tied to the bed above the patient’s head, one arm was tied by the person’s side, which was a little more comfortable. A breakthrough came when the psychiatrist at San Lazaro participated in the basic palliative care course, and became involved in the care of the rabies patients. She assessed them as psychotic and was able to prescribe an anti-psychotic drug. 

Prompt administration of the anti-psychotic medication is critical in controlling the acute psychosis suffered by rabies patients. If the patient receives the medication on admission they do not become combative, and there is no need for restraints. The effectiveness of the medication was never in doubt, but its availability was initially a serious problem. The hospital pharmacy did not always have it due to funding constraints, and the patient’s relatives generally could not afford to pay for it. The variable availability meant that sometimes the patient did not get the vital first dose soon enough to control the psychotic symptoms. The situation was resolved when the doctor involved in the palliative care of the rabies patients personally purchased five doses, so that the medication could be on hand. Relatives are asked if they can pay, but if they cannot the Philippines Charity Sweepstake Office now provides funding to replace the doses which are used. 

The staff of the ward were still frightened to approach the patients even when the anti-pyschotic medication made them peaceful, and they did not want the restraints removed. A simple act by Larri helped to allay their fears and to change the practice of tying the person to the bed until they died. One patient who had been restrained for 72 hours had not received any nursing care, and his wife was in great distress about his situation. The medication had been effective in controlling his psychotic symptoms, and he was not aggressive. Larri, together with one of the nurses from the Core Team, sponged him and attended to his needs. This act broke through the fear of the ward nurses, and led to the practice of restraining the patient only until medication has controlled the psychotic symptoms. Now parents can hold their dying children, relatives can sit with and tend to their loved ones, and nursing care can take place. 

The situation of one particular patient highlighted another issue for the palliative carers. The patient had not been told he was going to be restrained, and was hurt as he fought with the men who tied him to the bed. He did not know that he had rabies, or that he would die in a few days. Before medication was used to control the psychotic symptoms of rabies, staff had found it difficult to communicate with the patients. With the psychotic symptoms controlled, it was possible to talk with the patient and to tell them the truth about their situation. It became apparent that staff had no training in breaking bad news, and so time was allocated in the palliative care courses for dealing with communication issues. It is now accepted that it is better to tell the patient and the relatives the truth, and staff have become experienced in handling the resulting distress. Telling the patient the truth has also opened the way for the spiritual and psycho-social care which is an integral part of holistic palliative care. 

During one of the palliative care courses participants expressed concern about the needs of relatives who stay in the ward and help to care for their loved ones who are dying of rabies. Relatives are often traumatized people with nowhere private to go during their stay at the hospital. A silid damayan or “room of comfort” was set up for the relatives of rabies patients, and it now provides a private space where relatives can take a break when possible, and staff can talk with distressed relatives. 

In the clinical area the Core Group and palliative care team are now working with the staff of the TB ward. This is a large ward of 180 beds, often with more patients than beds, which means there are two patients in a bed. Tap water is not always available for periods of the day, and a long hose is used to bring water from another part of the hospital. Some patients stay in the ward for many months; some are discharged home to their families but readmitted when the family does not want to care for them. There are children in the ward who no longer have TB but whose parents have vanished. 

The TB ward is very isolated from the rest of the hospital and the staff are seriously overloaded. At times there are only two or three nurses on a shift to care for 200 or more patients. Much of the care of the patients, many of whom are terminally ill, is done by the Bantay, “the watchers”, who are mostly friends and relatives of the patients. The Bantay are an integral part of the operation of the ward, which simply could not function without them. 

The palliative care team soon recognized that the Bantay have their own needs, and Liese was instrumental in designing the Bantay Support Programme. This programme teaches the Bantay basic physical care and infection control, and gives them time and space to express their emotional concerns and pain. They are taught how to best respond to the difficult issues they are confronted with, such as talking about death and dying with their loved ones. 

In March 2004 the team began working with the Extended Childcare Centre (ECCC) which is situated in the grounds of the hospital. The Centre is funded by a Canadian Christian organization, and was set up originally to care for the children of AIDS patients in the hospital. Those services have now been extended to the children of all patients in the hospital. The Centre provides support for grieving children, and gives them some respite. Some of these children’s parents are in the TB ward, and so the staff of the ward and the childcare centre met to discuss ways in which they could collaborate. The patients want to see their children, but the fear and likelihood of infection is strong. It was decided to turn the derelict space outside the TB ward into a garden where the children could play and the parents could watch through the windows. When the children are not in the garden, it will provide a calm space for the TB patients and their relatives. 

Teambuilding is an essential aspect of the Starfish Programme at San Lazaro Hospital. The support and inspiration which staff who participate in the programme provide for one another is a key factor in sustaining change as the programme continues to expand and consolidate. The shared commitment and enthusiasm of the San Lazaro team have already had an effect outside the hospital, with other hospitals seeking to set up their own programmes. 

In 2003 a meeting was convened in Manila involving several hospitals and organizations, together with a representative of the Department of Health. The meeting resulted in the establishment of a National Association for Palliative Care and Hospice for the Philippines. 

Larri Hayhurst, Liese Groot and Sue Marsden will continue their work at San Lazaro Hospital until mid-2006. In four years the Starfish Programme has brought far-reaching change to San Lazaro Hospital. It will continue to be a source of hope as its influence spreads further in the hospital and beyond to other hospitals in Manila and the entire Philippines health system. 

A little girl was walking along the beach. The waves were throwing starfish onto the sand, and they littered the beach. One by one, the girl picked up the starfish and threw them back into the water. 

A man walked by and watched the girl throwing the starfish back one at a time. After watching for a few minutes he said “You know, what you are doing makes no sense. You can’t possibly keep up with the waves. There are thousands of starfish. What you are doing makes no difference at all.”

The little girl looked at the man. As she looked at him, a wave threw more starfish onto the sand. She picked one up and threw it back into the water. Then she looked up at the man again and said: “It made a difference to that one.” 
                       Adapted from The Starfish Story by Loren Eiseley
______________________

Anne Dickinson is the Executive Officer for the New Zealand Catholic Bishops Conference and a part time researcher for The Nathaniel Centre.

©
2004

The television documentary, “My Foetus” was shown to New Zealand audiences in September this year. “My Foetus” presented viewers with amazing images of a child before birth, which revealed just how like a newborn baby a foetus is, not just in appearance, but in behaviour. 

In making her documentary, producer Julia Black said that what she was trying to do was “to work through how I can keep the foetus in the picture, in a sense, but still be pro-choice.” She spoke of having an abortion when she was 21 years old and how, at age 35, she had now changed her views, not because of “religion or morality”, but because of the insights of technology. She spoke of technology’s ability to convince by providing “a very clear window into the womb.” 

In 2003 New Zealand lost 18,510 children through abortion. There has been a steady increase in the rate of abortion, which shows no signs of slowing. One in four pregnancies in New Zealand now end in abortion, compared with one in ten pregnancies two decades ago. Even the Abortion Supervisory Committee which oversees the application of abortion law in New Zealand, has expressed concern about the increasing rate. 

The reasons for the increase in the abortion rate over the last 25 years are complex. For the individual woman having an abortion, the effect is often traumatic with deep and long-lasting effects. The continuing increase in the abortion rate cannot be reduced to single factors or to general statements which imply that New Zealanders are callously indifferent to the death of unborn children. 

There have been very significant demographic and sociological changes in New Zealand in the past 25 years. The trend towards later marriages, delayed motherhood and smaller families is now very evident. In the year to June 2004, 51% of babies were born to mothers over the age of 30, compared with 39% in the year to June 1994. 

In the early 1970’s the 20-24 years age group was the most common age group for childbearing in New Zealand, whereas in 2004 the most common age group for childbearing is 30-34 years. Whereas in the early 1970’s the 20-24 year age group was the most common age group for childbearing, in 2003 the same age group had the highest increase in the rate of abortion. 

The marriage rate has declined significantly since the 1970’s, with the current marriage rate being only about one-third of the peak marriage rate in 1971. The age at which partners enter into marriage has also changed significantly. The median age for men marrying for the first time in 2002 was 29 years, compared with 23 years in 1971. The median age for women marrying for the first time in 2002 was 28 years, whereas it was 21 years in 1971. 

What do we learn when we set abortion within the context of these demographic and sociological changes?   And what other changes do we need to consider as part of that context? 

The number of people in the 15-24 year age group with post school qualifications has increased markedly in the last 25 years, and fewer young people are leaving school without a qualification. Much of the growth at tertiary level has been the result of increased female participation in education and training. 

Becoming a better educated society is a good aim in itself which must be pursued, but there are consequences which need to be considered. The Student Loans Scheme was introduced in 1992, and many young people in the 20-30 year age group now have large debts to deal with prior to obtaining mortgages and buying homes. Women in the 20-24 year age group may see having a child as preventing the completion of a qualification for which they have already accumulated a sizeable debt, with no way of paying it off. For the 25-30 year age group, establishing careers and reducing their debt load may be a major factor in delaying having children and subsequent abortions. These factors may all be part of the context for decisions women make about abortions. How well do well do we understand these factors? 

Last year there was a nationwide focus on child poverty in New Zealand. Many people were astounded to learn that, by the government’s own poverty indicator, one child in three in New Zealand is living in poverty. The Ministry of Health’s Sexual and Reproductive Strategy 2001 refers to a New Zealand study which showed that “43% of women presenting for an abortion had a family income of less than $22,000, and more than half had a community services card”. What part is poverty playing in increasing our abortion statistics? 

In 2001 Marilyn Pryor, long time pro-life advocate from Wellington, visited the Netherlands to investigate why that country has the lowest abortion rate in the Western world. Her book “Abortion in The Netherlands” needs to be revisited as part of any research or action taken to reduce the rate of abortion in New Zealand. In her conclusions, Marilyn Pryor makes the following point when comparing New Zealand’s high levels of abortion with the comparatively low levels in the Netherlands: 

“It is clear that the law has little bearing on abortion rates in these two countries. While abortion is available as a women’s right to choose in the Netherlands, it remains a criminal offence in New Zealand unless the mother’s life or health is seriously endangered by pregnancy”. 

A focus on changing the law would be, by itself, an inadequate approach to dealing with an increasing rate of abortion. Few women go through abortion without it being a traumatic experience. The factors leading women to have abortions are complex, and sophisticated research is required if the points for intervention are to be identified and trend reversed. 

“My Foetus” would have left its audience in no doubt that a human being dies when an abortion is performed. Technology has revealed truth, and has placed a new and welcome emphasis on the child. But if we are to have an effect on an increasing abortion rate, we must also seek the truth about what leads a woman to choose abortion, rather than assuming that we already know that truth. 

Rev Michael McCabe, PhD
Director
The Nathaniel Centre

©
2004 

In the course of my work I have encountered various theories which describe leadership behaviours characteristic of effective and ethical organisations. In the first part of this article, I will summarise three such theories and offer a short reflection on what they teach us. Then, in a second part, I will offer some questions to assist those involved in aged care to reflect on the ethical nature of their own behaviour. 

What do I mean by the term ethical? Ethics is the evaluation of human behaviour, and the allocation of the judgment by a society or individual that this action is either virtuous or to be avoided. Ethics is the result of a formation process whereby we come to hear a voice, whether in the inner core of a person or a society, which says: “Do this or shun that.” Behaviour that is virtuous is chosen knowingly and freely and leads to responsibility and accountability.

1.                   De Beer
De Beer, a foundational theorist in operations research, has developed an approach to describing organisations that he calls the “Viable Systems” model.   Simply put, De Beer believes that every effective organisation - hospital, health practice, rest home, or corporate health service - mimics a living organism. His approach, which focuses on the needs of the environment being served, looks at four key elements that ensure viability:

i.  Interacting with the environment
An organisation can only offer service if it is aware of the needs of the group it is serving, has the resources and is focused to act. By and large the actions of the “acting groups” can be recorded, measured and costed. We can record what actions are taken - who is spoken to, by whom and when. We can make judgements whether agreed to patterns of behaviour have been followed. We can measure the number of dollars per negotiation. The acting groups can include everyone - from those who are the caregivers to those involved in the negotiation of funds.

ii.  Coordination of actions
Those who act must be coordinated. It is the role of coordination to ensure the best is chosen and acted upon at the right time and in the right order. There is nothing worse that applying for the same grant twice or giving a repeat dose of medication. As an organisation grows in its complexities there is a need for the coordination to be organised.

iii.  Control and regulation of resources, time and focus
There is a need to work within various constraints that the stakeholders - State, client group, or the wider community - are able to afford. This involves control and audit, planning and budgeting, resource allocation, reporting and review. These constraints inevitably place some limitations on meeting the expressed needs of the group being served.

iv. Governance
An organisation’s effectiveness depends on its vision and focus.   This involves the development of governance, policy and procedure to balance the requirements of the various stakeholders and to ensure the ongoing viability of the organisation. Even the best-managed unit will go under if the wider needs of the political, social and economic environment are not taken into account. 

De Beer concludes that it is rare to find a viable system in which all four of these actions are associated with a single-person role. The norm is for different roles to take different responsibilities. 

2.                   Brousseau and Driver
Brousseau and Driver have developed a theory based on the amount of information leaders need to make a decision and the rapidity of their decision making. Their theory highlights that people display certain behaviours when they think others are watching and act differently when on their own. The model is based upon four different leadership profiles.

i. Some people want only the minimum of information required and will then
   get on and make the decision. They want to act quickly and accurately
   within established patterns. They are frustrated by delay, innovation and
   procrastination.

ii. A second group want a breadth of information and perspectives. Then,
    then they have that information, they are willing to get on and make a 
    decision quickly. They don’t require a depth of information.

iii. The third group want a fullness of information and require such before
    acting but they want that information to be organized so as to come to 
    decision relatively quickly. They are focused on acting and getting
    results. They like a good plan and structure so as to get a risk tolerant
    result.

iv. The fourth group seek multiple sources and elements of information.
     They will suspend judgment till they have information of a level that 
     enables them to see and judge from multiple dimensions.

One group is fast, consistent, loyal, persistent and orderly. They get things done but may resist change and ignore new ideas. The second are fast, likeable, generate ideas, adapt swiftly, but may have a short term perspective, and lack coherent planning. The third are thorough, accurate, planned, objective and logical. They may be over-controlling, rigid and argumentative, and may actively resist others input. The last group tends to be creative, resourceful, collaborative problem solvers who are empathetic and tolerant. 

When Brousseau plotted the most successful managers according to their level in the organisation, he found that the best supervisors were profiled most strongly at one, the managers at two, the GM’s at three and the CEO/leaders at four. 

From this Brousseau concludes that behavioural preferences in individuals lead to actions, decisions and approaches that are more successful and appropriate at different levels of the organisation. This theory suggests that in an organisation particular people are going to approach their decision making in different ways. Persons will seek to make decisions with diametrically opposed amounts of information. 

Brousseau also concludes that as a person matures and grows with experience, the focus and approach of their decision making can develop. Accordingly, the level and amount of responsibility a person can handle changes in individuals and is different for different individuals. This is very much in keeping with the thinking of traditional moral development theorists such as Kohlberg and others. 

3.                   Mahoney
A third model, Leadership Efficiency Analysis, derives from a 30-year longitudinal study by Mahoney and colleagues. They describe different sets of skills and competencies that are characteristic of “successful” leadership in organisations. 

The first set of leader skills includes:

i.  Having the ability to create a vision. This requires a series of skills and abilities, whether in an individual or group, that include being mistake averse and being steeped in the core elements of the profession - for aged care we might describe these as: do no harm; act to heal; support autonomy and independent decision making; promote informed consent; and acknowledge the place of next of kin.

ii.  Showing innovation and being able to develop a culture of possibilities
     and novelty.

iii.  Being aware of the technical demands of the business, environment 
     and sector; for example, having sound knowledge of the process of
     aging as well as the legal and financial structures.

iv.  Being able to make decisions and see their own limitations and
      strengths.

v.  Acting strategically by recognising the changing demands of the social,
     political and cultural environment; for example the changing
     demographics of an aging population and knowing that needs differ
     according to culture and gender. 

A second set of skills and competencies identified by Mahoney centre around the ability of leaders to develop persons who will work with and for them. Successful leaders are persuasive and outgoing, excited, yet able to exercise restraint. 

Finally, successful leaders possess a third set of skills and competencies that enable them to implement the vision. They can structure, decide on the best tactics, communicate and delegate. They are then able to follow through. They will take control of resources, give clear and accurate feedback and will work to achieve results. They want to be a leader and, interestingly, they are to a degree dominant, focused on output and production. 

If this profile of the effective leader/manager seems rather “tough” it needs to be noted that Mahoney’s study highlighted one other key element that characterises most successful leaders/managers. They are also team players; cooperative, consensual, empathetic and aware of the demands on, and the needs of, their stakeholders and immediate boss. 

What can we learn from the three theories? 
Reflecting on organisational structure in the light of the three theories has led me to identify a series of levels in the leadership of an organisation and to postulate a thesis. My thesis is that an individual’s ethical decision making, and therefore their culpability and virtue, are a product not only of the traditional elements of knowledge and freedom, but of the very makeup of their personality and the behavioural and developmental levels that they have achieved. In other words, personal traits that shape our ability to gather and use information impact on our ability to lead, decide and act, and consequently to accept responsibility for our actions. The theories highlight that there are different profiles, needs, competencies and levels of information required if someone is to lead effectively and act morally in an organisation and that this may be different at different levels of the organisation.

How can we relate these insights to the way in which we approach ethics in aged care? I believe it can be done by raising a series of questions which will lead you to explore and evolve your own practice. 

Ethics in Aged Care
In general, discussions about ethics and decision making tend to focus on individual responsibility and individual impact; the way one treats patients, end of life decisions, nutrition and hydration, enforced feeding, etc. I will, however, begin at the opposite end - at the level of governance - with the ethical responsibilities of the directors and owners and the wider group of stakeholders - the community and the State.

If one is frail and elderly, where does the primary responsibility for care lie? Does it lie with the individual, their family, the local community or the national community? What is our ethical accountability to the elderly who are in need and do not have the resources? There are core social responsibilities to feed, shelter, to heal and not to harm, to care and act justly. These questions lead us to a fundamental ethical judgment - the allocation of community resources.

The question of ethical behaviour then moves to the level of the organisation involved in aged care services. An organisation is morally and ethically bankrupt if it is unaware of the social, economic and political demands, and if it does not structure itself prudently in respect of best financial, managerial and clinical practice. Board members and senior management must be capable of understanding and making complex decisions. This, in turn, involves examining the vision, intention, aims and structures of our organisation. 

We have an ethical responsibility to evaluate the environment in which elderly people live. What is acceptable, socially and ethically is not limited to what is legal. It was at one time legal to have unpaid servants. That did not make it ethically acceptable. It is legal to establish under New Zealand law a company that makes a healthy profit out of the needs of the elderly. Does that make it ethically acceptable? While not a vice, there is no over riding virtue in making a profit. It is only one element that informs the vision of aged care facilities.

When establishing an aged care facility we put out a prospectus for shareholders and investors and we put out a brochure for prospective patient/clients. What are the obligations and whose obligations come first? Is there adequate funding and ability to protect the interests of those who invest? If not, this constitutes a breach of trust that can all too easily amount to negligence, false pretences and theft. If we have put ourselves forward as a “community of care”, where is our obligation to the impecunious and the frail, the disabled and the high need? If an individual can’t pay should we put them on the street for a breach of contract? 

Are we only responsible for the things we have done or are we also responsible, by omission, for failing to recognise a possibility or enable access to a service that we should have? Have we chosen people with the proper ability and preferred behaviours to lead the organisation? Are those with leadership responsibility able to communicate to others and persuade them as to what needs to be done? The Royal Commission of Inquiry into the treatment of cervical cancer presents us with a perfect New Zealand example of a system wherein, by commission and omission, people acted both immorally and illegally. 

Owners and board members need to be able to see and mitigate the risks, need to be aware of the legal and contractual obligations as well as the ethical and moral responsibilities they are taking on? Herein lies both individual and corporate moral responsibility.

The next level of accountability lies with those in an organisation who have responsibility for the planning, structuring and organising. The structures of management exist not only for financial and organisational accountability - they are structures through which ethical accountability and responsibility also flow. 

There is an ethical and moral responsibility that service personnel have the proper skills and resources and that they are competent to deliver such. Are there established plans, budgets and programmes? Do key staff possess the core technical skills required? Is there openness in listening to best practice at the governance, managerial, supervisory and action levels? Medical training doesn’t necessarily make someone an expert in the protection of shareholders monies or employees’ contractual requirements. Is correct advice being sought? Are legal requirements articulated? Are there established audit, control and coordination processes? 

What about systems for communication? Others cannot be held responsible unless they are aware, are resourced and are told that something is working or not working. Are there clearly established expectations of performance and results? Are there just wage and working conditions? Is there a commitment to professional development? Is the care holistic in its vision and practice? 

What is the care environment like? Are there high standards of hygiene? How can patients’ autonomy be preserved and their choices maximised? What choices do they have? What efforts are made to ensure they understand? What about cultural safety? Are there the systems to ensure that things are delegated and recorded, whether paying for a job or recording faults in the service?  

It is not enough to focus on the actions of the board or health professionals. Legal and moral responsibility and accountability also apply in respect of the accountant, the physiotherapist, the caterer, the priest or chaplain. There is a responsibility to ensure that they don’t break the law, and that there is a professional relationship based on care and trust. 

The next key issue is the way in which an organisation interacts with its environment. Are key staff capable of seeing the “big picture” or are they very good practitioners who have a very narrow approach? Financially sound systems managers who can cut costs and develop strong reporting structures need to understand and be committed to the broader vision while also being aware of the technical requirements of their industry. In the aged care sector there are numerous examples of innovation and resource allocation at work. But has this been done to the detriment of employees? Who are the people who are caring for the clients? Are they trained, competent, rested and aware of best practice?

People cannot act virtuously without knowing what constitutes best practice and without the knowledge and wisdom to avoid risk. We accept that persons cannot blame their actions on a superior: “I was under orders”. However, if a person does not know, has no real choice or ability to change the situation and is trying to balance obligations that are to some extent at least in conflict, then their personal culpability is lessened. At the same time the culpability of those who had the obligation to organise, to supply, resource, and plan is raised. There is an ethical duty to foster an organisational culture that is responsive to environmental needs within the constraints of resource and policy. 

Finally, at the level of interaction with the client, the supplier or the community, staff have an obligation to act professionally according to established best practice; to know their craft, to remain updated, to give an honest day’s work for an honest day’s pay, to communicate and reflect the needs discovered and to work for the betterment of the organisational whole. 

In all of these elements we are led to the font of moral culpability. Within a healthy organisation structures and processes will empower persons so that they act with full knowledge and according to a path that is freely chosen. 

The organisational theories outlined above suggest that in an ethical organisation the staff and practitioners need ready access to information, will know the possibilities and be able to make quick and focused decisions. In making these decisions, however, there exists a fundamental tension between the needs of the client and the ethical responsibility of staff. 

Those in positions of leadership who are charged with making decisions will be under pressure to act. They will decide and act on the basis of the information that is available to them. They will also act according to the best practice they have been educated in. In general we can say that they will act as taught. If the organisation says that informed consent is required, then they will almost certainly act accordingly. However, it is equally the case that if practice dictates, for example, leaving a client in bed till 10:00 am and then letting them sit for seven hours, that staff will see that as the norm. Some might say that these people are not responsible. I suggest that those who step into the aged care arena at whatever the level, including the uninformed, the untrained, the unskilled, are morally and ethically responsible. 

Conclusion
There are skills, abilities and ways of thinking that are required of individuals in positions of responsibility within the different parts of an organisation. To let someone sit on a Board who they are unable to understand the wider implications is unethical. To have them there purely because they are the financiers is unethical; they should appoint a director to represent their interests. 

To appoint a CEO who cannot communicate, plan and organise, is unethical. To have a night supervisor in an operation of 500 clients who cannot coordinate, see options and work as part of a team is unethical. 

To appoint staff and not train them in the understandings they require to make decisions with and on behalf of their clients is unethical. To appoint a person beyond the level of their fundamental ability and behavioural competency is unethical. 

On the other hand to establish an organisation with staff who have these fundamental sets of abilities and skills is virtuous and the basis of a just and ethical society. It is at this level that we create the “City of God”. Ultimately this requires an organisation to move beyond a simple task oriented focus. The challenge of behaving in an ethical way at the organisational level requires the establishment of a common ethos and a culture of communal responsibility and accountability. This calls for a modus operandi of empathy, consensus and cooperation, all within an awareness of the stakeholders’ needs and the requirement for each individual to do their job ethically. 

How can we see this in a take home package? De Beer, Brousseau and Mahoney couldn’t have put it any better than a tent maker from Antioch who once wrote:

"Instead of that God put all the separate parts into the body on purpose. If all the parts were the same how can it be a body? As it is the parts are many, but the body is one”. (1Cor 12:18ff) 
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Mark Richards works in career consulting, leadership development and management assessment. His experience also includes parish leadership, chaplaincy work and chairing a Health Ethics Committee. This article is an edited version of a presentation given by the author at The Nathaniel Centre’s Inaugural Conference ‘Spiritual and Ethical Issues in Aged Care’ in November 2003.

©
2003

In March 2004 an International Congress on "Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas" was held in Rome. The article below, which first appeared in Bioethics Outlook, Vol. 15, No. 3, September, 2004, looks at the implications of the Pope’s address for the treatment of persons who are in a state of “post coma unresponsiveness” (traditionally known as the vegetative state). 

Pope John Paul II’s address to the recent conference on life-sustaining treatments and the ‘vegetative state’ brings further clarification to a long running debate among Catholic ethicists about our obligations towards persistently unresponsive patients. [1] All participants in this debate agree that there is an obligation to take reasonable (or “ordinary”) means of sustaining a person’s life, unless and until doing so becomes “futile” or “unduly burdensome” (i.e. “extraordinary”). The debate has centred on the application of this principle to unresponsive patients. 

With respect to the principle itself, one of the most impressive contributions at the conference was from Maurizio Calipari, a bioethicist with the Pontifical Academy for Life. [2] Reviewing the traditional teaching of the Church and of Catholic moralists, he argued that the tradition understands a treatment to be ordinary and obligatory unless there is reason in a particular case for it to be judged extraordinary (and so not obligatory). The terms “ordinary” and “extraordinary” have, of course, become ambiguous in recent years, since they are often taken to measure simply the “ordinariness” of a treatment in medical practice; thus treatments once extraordinary (in a numerical or financial sense) may now be quite ordinary, cost effective, and in common use. For purposes of ethical analysis alternative terms have been suggested, e.g. “proportionate” and “disproportionate”. 

Calipari proposes that these sets of terms be distinguished and applied to two distinct steps in a clinical-ethical analysis. The first issue concerns the appropriateness of a treatment from the medical point of view. A treatment is “proportionate” to the extent that it is suitable for achieving an appropriate medical goal in the circumstances. The second issue concerns the appropriateness of a treatment for this particular patient. At this point, the issue is whether a proportionate treatment would be “ordinary” or “extraordinary”: would it involve a certain “impossibility” for the patient, because it would impose an undue burden on the patient or on carers or health care resources?

Returning to the debate among Catholic ethicists, Calipari’s analysis enables us to identify what I will call two “short cuts” in clinical-ethical reasoning that are commonly deployed in this debate. While accepting the obligation to use ordinary life-sustaining means, some Catholic ethicists have argued that persistently unresponsive patients (those said to be in a “vegetative state”) constitute a special category of patients. Given their lack of responsiveness and the unlikelihood of any improvement, it has been argued that no legitimate medical benefit arises simply from keeping these patients alive. (A few ethicists have gone further and argued that to prolong the life of such patients is contrary to their dignity; they claim these patients are dying and should be allowed to die.) This approach involves the first “short cut” - namely, to suppose that the unresponsive state of itself alters the kind of obligation there is to preserve a person’s life, or to suppose that the normal medical goal of sustaining life no longer holds for these patients. 

Of course, if persistently unresponsive patients are to be kept alive, they need to be given food and water by other people, and typically, by tubes inserted through the nose or directly into the stomach. Where tubes are used, the patients are said to be receiving nutrition and hydration by “artificial means”. Some Catholic ethicists have argued that the need to use tubes, given the medical expertise required to insert the tubes and supervise their use, shows that such feeding is “extraordinary”, and is disproportionate to the proposed benefit. The Supreme Court in Victoria in 2003 adopted this view when it held that tube-feeding was indeed a “medical treatment”, and as such was optional, able to be withheld or withdrawn at the guardian’s request. This approach involves a second “short cut” - namely, to suppose that because a procedure is, or involves, a medical treatment it is not an ordinary and so obligatory means of sustaining life.

The Pope’s address can be summarised as rejecting both these “short cuts”. First, the Pope says that persistently unresponsive patients are not a special class of persons for whom the normal medical goals and obligations do not apply. They are human persons, with the same rights as others, albeit they are severely disabled. Although they are unresponsive, these patients are not as such dying. Their situation is not like that of patients who are close to death (in a few days or hours), irrespective of what care or feeding is offered to them. So to say that unresponsive patients need not (or should not) be fed amounts to saying it would be better if they died. To stop feeding an unresponsive person for this reason would be equivalent to euthanasia.

Secondly, the Pope says that “artificial” feeding through tubes is not in itself an “extraordinary” means of sustaining life. On the contrary, feeding a person is a “natural” means of caring for him or her, and, in the context of modern medicine, the use of tubes can be a convenient and cost effective way of feeding a person. Tube feeding is “in principle, [an] ordinary and proportionate, and as such morally obligatory”, way of caring for a patient. 

If we avoid the two “short cuts” I have noted, and following Calipari’s analysis, we see there are two sets of questions we need to ask about tube feeding: first, is it proportionate or effective? Is it keeping the person alive? If it is not, e.g. because the patient cannot absorb the nutrition, then it should be stopped. Secondly, is it extraordinary for this patient? Does it involve burdens to the patient which outweigh its benefits? If it does, e.g. because of infections and problems in maintaining the tube in place, then it may be stopped. 

The key sentences in the pope’s address are: “The administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, furthermore, should be considered, in principle, ordinary and proportionate, and as such morally obligatory, to the extent in which and as long as it is seen to achieve its proper purpose which in the present case consists in providing nourishment to the patient and alleviation of his suffering.” 

An issue the Pope does not address specifically is whether, even if the act of feeding a patient is “ordinary” and “natural”, the insertion of a feeding tube is in itself a “medical act”. I think it is clear that the insertion and monitoring of a tube, and of the substances and quantities inserted, does involve medical and nursing expertise. To this extent, it is a medical procedure that needs to be judged by the usual clinical and ethical criteria. The degree of medical intervention that tube feeding requires in a particular case needs to be proportionate to the prospective benefit, and not unduly burdensome. In making this judgment, it is important to recall that keeping a patient alive, even an unresponsive patient, is always in principle a legitimate and obligatory medical goal. 

Conclusion
I have said that the pope’s address warns us against two “short cuts” in ethical reasoning. There should be a presumption, in principle, that all patients be given food and water (if necessary through tubes) unless and until this is disproportionate (not effective) and/or extraordinary (unduly burdensome). Each case must therefore be examined on its own merits - there should be no short cuts that save us from examining the facts in each case. In particular cases it may be apparent that tube feeding is not obligatory: e.g. in contexts such as the developing world where there is no medical expertise available to insert and monitor the tube; or where the tube is causing infection and other disproportionate side-effects, thereby adding to the patient’s complications; or where the patient cannot absorb the food etc.
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[1] I use the term ‘vegetative state’ because that is the term used in the papal statement.

[2] Calipari’s paper is available in the special edition of L’arco di Giano, published for the conference by Instituto per 1’Analisi dello Stato Sociale, (March, 2004), pp. 50-57.
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Rev Dr Gerald Gleeson is a moral theologian and priest of the Archdiocese of Sydney. He lectures at the Catholic Institute of Sydney and is a research associate at the Plunkett Centre for Ethics and Health Care (Australian Catholic University/St. Vincent’s Hospital). 

The Nathaniel Centre is grateful to the author and the Plunkett Centre for Ethics (Sydney) for permission to reproduce this article.

On 6 August 2004 the Health Select Committee reported to Parliament on the Human Assisted Reproductive Technology Bill 2003. The Bill establishes a legislative framework for controlling human assisted reproductive technology, and fills an eight year gap in which changes in technology and science outstripped attempts to introduce a regulatory framework. 

The Select Committee has recommended a number of changes to the Bill. These include significantly strengthening public input by requiring the Ministerial Advisory Committee to carry out public consultation before advising the Minister or issuing guidelines. 

In their report the Select Committee has supported the list of prohibited procedures and research, which includes cloning for reproductive purposes, implantation of animal/human hybrid embryos, commercial surrogacy arrangements, and commercial supply of embryos or human gametes (eggs and sperm). The report recommends that the following also be prohibited: 

§       selecting an embryo for implantation on the basis of sex unless the 
         action is taken to treat or prevent a genetic disorder

§       collecting or using a gamete from a person under 16 years of age, 
         unless it is for the later use of the person it has been collected from

§       the genetic modification of gametes or embryos for reproductive 
         purposes

§       the use of gametes from foetuses for reproductive purposes

The Select Committee’s decision to stay with the original list and to add to it after hearing submissions is important. While the Committee’s recommendations will strengthen a number of aspects of the Bill, their report also notes that the Bill will give New Zealand a system which is a “less prescriptive and more flexible” regime than that found in a number of other countries. 

From a Catholic perspective there are some welcome alterations to the Bill. In its original form, future decisions about new assisted reproductive technologies would have been made by a Ministerial Advisory Committee, which was not obliged to carry out any form of public consultation. Securing the right to continue to have input on assisted reproduction matters was a strong feature of the Nathaniel Centre’s submission. 

There are still matters of grave concern in the amended Bill.

§    The destruction of ‘spare’ embryos is required after storage for 10
      years, with an extension needing ethics committee approval.

§    The Bill does not prohibit creating or using embryos for research,
      or the use of embryos to provide stem cells.

§    The creation of cloned embryos, rather than being prohibited, is a 
      matter on which the Ministerial Advisory Committee is to provide 
      advice to the Minister.

§    Embryos can be cloned or genetically modified, animal-human hybrid 
      embryos created, and embryos created from gametes from a foetus, 
      as long as they are not implanted. 

Much of the detailed decision-making will unfold in coming years as the Ministerial Advisory Committee formulates guidelines and advice on matters such as the use of cloned embryos for research, pre-implantation genetic diagnosis, genetic modification of human gametes and embryos, embryo donation and the import and export of gametes and embryos. For this reason it was vital that public participation in future decision-making was guaranteed, as it will be if the changes recommended by the Select Committee are confirmed as part of the Second Reading of the Bill.  

As this issue of The Nathaniel Report goes to print, the HART Bill having passed its second reading, is being debated by the Committee of the Whole House.
1/11/2004

Earlier this year Toi te Taiao: the Bioethics Council undertook a process of dialogue with New Zealanders on the cultural, spiritual and ethical issues arising from the use of human genes in other organisms. The process involved using focus groups to identify the issues, followed by a programme of dialogue meetings and 12 hui, an online dialogue process and written submissions. The Council presented its report to the Minister for the Environment, Marion Hobbs, in August. 

The Council found broad agreement among a wide spectrum of people that it is ethically appropriate to use human genes in other organisms where this could alleviate human suffering or save lives. 

The Council’s report states that in strictly scientific terms it is difficult to sustain any distinction between a “human” gene and those from other organisms. All genes are made of the same chemicals (bases), and many human genes have the same or very similar sequences of bases to those found in organisms ranging from flatworms to chimps. Genes produce proteins, and increasingly scientists are producing human proteins without any direct physical use of a human gene or a copy of a human gene. A DNA sequence which will create a specific human protein can be synthesized in a laboratory and then inserted into the host organism. As more than one sequence of bases can produce the same protein, these “synthetic genes” do not need to have the same sequence of bases as the gene which produces the same protein in our bodies. 

The Council notes that when this path is followed to produce a human protein, it is questionable whether a “human gene” is being used at all. The synthetic gene used to create the human protein has no connection with a particular person, and is not the same as genes found in humans. 

However the Council points out that to many people human genes are more than chemicals – they have cultural significance. They have become symbols of what we have inherited from our ancestors (as in the Māori concept of whakapapa), as well as symbols of the relationships we have with one other and with other forms of life. 

The Council concludes that the use of “human genes” (either copies or synthetic genes) for the production of a single protein in the host organism does not raise sufficient cultural, spiritual or ethical concerns to prevent this kind of use, particularly if it represents a step in research which aims to alleviate human suffering.   However because human genes are a culturally (although not scientifically) significant group, their use in other organisms does require additional ethical considerations compared to other genetic modifications. The Council opposes any genetic modification of animals which would make them look like humans or provide a capacity for language and associated powers of reasoning. The Council also expressed concern about gaps in animal welfare legislation, and the effects of the commercialisation of science.