HIV/AIDS in Africa: Hope in the midst of tragedy
An Interview with one of the founders of Open Home Foundation International
The Open Home Foundation in New Zealand was started by a Wellington couple who were looking for a different way of helping children in need. Ewen and Gillian Laurenson set up the first small ministry in 1977 which aimed to provide support for children based on the idea that children fared best in families. Built on the promotion of 'families helping families', they became a national organisation in 1986 and their model of care has expanded throughout New Zealand. It is now one of the Ministry of Social Development's largest independent providers of social services for children and families (Troughton, 2013) with an emphasis on a child-centred and family-focused Christian approach.
After an invitation in 1991 to visit India and assist there, Ewen and Gillian started the Open Home Foundation International, which now works in India, Romania and Africa. The Nathaniel Report was pleased to be able to interview Ewen recently and asked him about the International Foundation's work in Africa with families and children who had been affected by HIV/AIDS.
----------------------------------------------------------------------------------------------
The Foundation was first invited to Uganda in 2000, and later to Zambia and Rwanda. The Foundation agreed that it would assist in these countries, by 'standing with them', but would not provide a New Zealand kind of service. Its work in Africa was to reflect the Foundation's vision, described by Ewen:
Every child, regardless of where they live, has the right to belong to a family and community where they are safe, loved, have enough to eat, that they can go to school, have access to health care and know they are loved by God.
In Ewen's words, the Foundation is non-denominational but is Christ-centred and prayer is at the heart of their work. While the basis of the Foundation's work is represented in its vision, the expression of its work differs from place to place depending on local circumstances. The invitation to be a partner in Africa came from a Ugandan pastor who saw the Open Home Foundation pamphlet at an Auckland church. He invited the Foundation to come and help with the enormous numbers of children who had been orphaned as a consequence of the deaths of their parents from AIDS.
HIV/AIDS has had a devastating impact on communities in Sub-Saharan Africa countries. The occurrence of the HIV virus in Uganda as well as other places was exacerbated by a number of local factors that led to appalling living situations for large numbers of families and especially for children. Polygamy was common and prior to the advent of cheap anti-retroviral drugs, once the husband had acquired the virus, all his wives would become infected. Upon the death of their parents, a common occurrence, children were often left to the care of an older brother or uncle, who was likely to have his own family to provide for. The children's care was often undertaken as an obligation, and the children "tolerated rather than loved". In these straitened circumstances there was little chance the children could attend school or receive adequate health care. The impact on families, and especially children, has had far reaching consequences for millions and will take generations to overcome: "A society suffering a profound unexpressed grief."
In 2012 there were 25 million people of this region living with HIV, of whom 2.9 million were children. There have been significant efforts to tackle the AIDS epidemic using a range of approaches, such as the ABC campaign, education about AIDS, the cheaper availability of anti-retroviral drugs and a global initiative (the United Nations Millennium Development Goal of 2000) to halt and begin to reverse the AIDS epidemic. The prevalence of HIV/AIDS in the three countries that the OHF first visited in 2000, Uganda, Rwanda and Zambia, shows that while there has been a concerted effort to reduce the rates of prevalence and to manage the disease, it remains a critical health and social issue.
While the number of new HIV infections continues to fall globally (declining by 50% across 26 countries between 2001 and 2012, and between 25% and 49% in an additional 17 countries ), HIV prevalence in Uganda has been rising since its lowest rate in 2006 , evidence that a degree of complacency has set in in some areas. In Zambia the prevalence rate of 13% (reported as being higher in urban areas) has not changed since the mid-nineties ; and in Rwanda, the relatively low prevalence rate of 2.9% masks the unequal impact of the disease as the prevalence rate for some of the most at risk groups is as high as 15% .
Overall the impact of HIV tends to fall unequally on women. For example, for Zambian women aged 15-24, the prevalence rate is twice that of men in this age group and in Uganda the prevalence rate for women is 5.4% compared with 2.4% for men. There are 170,000 children in Zambia estimated to be living with HIV and in 2009 there were 690,000 AIDS orphans3. In Uganda, in 2011, there were estimated to be 1.1 million children orphaned by the AIDS epidemic2, and in Rwanda in 2012 there were 120,000 AIDS orphans. The prevalence rates for women are higher for a number of reasons, including women's greater exposure to sexual violence, the refusal by their husbands or partners to use condoms, and the fact that women marry and become sexually active at younger ages than men, often marrying men who are older and may have already had a number of sexual partners.
Without doubt, the introduction of anti-retroviral drugs, and particularly the earlier access to and the reduced cost of treatment, has contributed to fewer AIDS-related deaths. These subsidised anti-retroviral drugs have meant that adults between the ages of 20 to 40 or more years, the 'provider generation' who had previously died or were incapacitated by HIV/AIDS, are not just surviving but are able to provide for their children. When the children are better supported and are freed from their caring roles, they are better able to access education.
Ewen's own experience of grief after his father died when he was 12 years of age, has enabled him to relate to the grief carried by these children, many of whom had lost both their parents and other close family and friends, as well as experiencing a 'loss of place' necessitated by a move to other areas. In the main, and in the absence of proper support, the children were simply expected to 'get on with it'. Their grief was often exacerbated by neglect, rejection and abuse and, for girls, by early sexual experiences not of their own making.
In the early 2000s, the focus of the Ugandan government's ABC (Abstinence, Be faithful, use a Condom) programme, was on the 'Abstinence and Be faithful' aspects, something that contributed to the drastic reduction of infection rates in Uganda when compared with other countries. Ewen, reflecting on how this approach conflicts with western notions of freedom, especially freedom of sexual expression, notes that many women, especially those who are victims of violence and rape, have limited control over their sexual relationships. Ewen has always been a strong supporter of the Abstinence and Be faithful approaches; they make sense in light of the evidence of reduced infection rates and have a particularly good chance in the places where Christianity is strong.
In addition, other measures have been introduced to resist the cultural forces which have exacerbated the HIV/Aids tragedy in Africa, particularly the domination of women by men . Ewen noted that girls are much less likely to be at risk if they are at school and being educated. He has also observed that 'women and girls are the cultural changers'; some education and a small amount of money can feed on their hope for a better life for their families. He believes that the education of girls is the key to lifting the family and community out of poverty. Meanwhile OHFI has conducted training seminars on the care and protection of young children, encouraging attendees to look beyond their own children, out to the needs of other children who are at risk.
In spite of the poverty and hardship suffered by the people of Uganda, Zambia and Rwanda, Ewen was constantly inspired by the expressions of hope there. He found the way the people expressed their love and hope through song exhilarating, and thought that their singing and their community orientation, as well as their openness to things of God were gifts they had that we had lost in New Zealand.
--------------------------------------------------------------------------------------------------------
In Rwanda the OHFI has partnered with a group called PHARP (Peacebuilding, Healing and Reconciliation Programme). PHARP members identify key women in a community, encourage the education of these women in a variety of life skills such as hygiene and diet, and assist them to develop small businesses. They also teach them about conflict resolution and reconciliation, focusing particularly on those who have previously harmed them. A number of the women had been grievously harmed by the genocide and the murder of some of their own families. As a consequence of the genocide, the rapes and the civil and political unrest for years afterwards, there are many orphaned, vulnerable children within every community.
PHARP asked if OHFI would come in and help them with training, talk to the people about the care and protection of children, and work with them to develop a programme for the children. They also asked if OHFI, working alongside local people, could help to develop a project that would create sufficient funds to support the schooling and health care for the children. As a result OHFI became involved with a community in Gicumbi.
The key contact they worked with there had lost his wife and children and forty members of his family to the genocide. He introduced Ewen to his small church where there were fifteen women who had HIV/AIDS, along with some of their children. Towards the end of the service another group of about fifteen women arrived from different churches. All were infected with HIV/AIDS and they came together once a week, spending some time together, praying, listening to one another, and providing support and encouragement to each other. Because of their impoverishment, none of the children was able to go to school or get the health care they needed.
Ewen described the scene in the church: "I always remember, these women stood and sang, actually they didn't just sing, they danced and sang. I asked for an interpreter, and it was really a song of love and hope and forgiveness and of a determination to make a better life as much as they were able to." Many of these women had contracted HIV/AIDS while being raped and had subsequently passed on the virus to their children. "So they'd been really traumatised. I was so taken by the suffering of these women, and yet by the faith and love and the hope that they were expressing." Afterwards, Ewen learned that they would love to be able to start a 'pig project' with the aim of breeding pigs.
When asked by the Wellington Cenacle Sisters for suggestions about a Christmas gift they could make, Ewen told them about the women of Gicumbi. The Sisters' then contributed to the purchase of eleven piglets – ten sows and a boar, and the OHFI undertook to pay a veterinarian to provide the local women with training in the care of the pigs. Subsequently 11 families were selected to receive the pigs; they were successful in caring for and breeding the pigs and handed on a quarter of each litter to another family.
The project was such a success that, when Ewen last visited, the group had grown to about 60 families, all owning pigs. Their children were all attending school and they were able to afford health care for their children, including the all-important anti-retroviral drugs which had been unaffordable before this project started. As this project has grown, again with money provided from New Zealand, the community has been able to purchase land, and they now plan to set up a communal piggery which will be used for the benefit of their more vulnerable children. Because of this project at least 200 children now have better lives and can look forward to a better future.
Eugenics in New Zealand
Hilary Stace
Eugenics is a pseudo-science concerned with improving the quality of the human race. It underpins the discrimination of those who are disabled or culturally or ethnically different by those who consider themselves to be morally and physically superior. Eugenists borrow the language and concepts of science, particularly evolutionary theory of ‘survival of the fittest’, to legitimise this discrimination. The flawed hypothesis underpinning eugenics is that some individuals, families and population groups are tainted with hereditary physical and intellectual defects causing consequent moral deficiency, making them less ‘fit’ than others.
Eugenic attitudes and public policy were particularly significant in the early decades of the twentieth century in many countries, including New Zealand. A common perception in Britain and much of the ‘western’ world at the beginning of the twentieth century was that evolutionary theory of 'survival of the fittest' had not caused society to rid itself of problems related to crime and poverty. Being part of the British Empire, it was not surprising that the eugenic debate here was influenced by the British one.
In the nineteenth century many migrants left Britain and Europe for a better life in New Zealand. Although infectious illness and accidents were common, disability was unwelcome as it conflicted with the ideals of a new society. Disability support was left to the benevolence of families or groups providing charitable aid. The immigration acts that restricted people from China (an ‘unfit race’) also banned ‘cripples, idiots, lunatics, infirm, blind, deaf and dumb’. The 1882 Imbecile Passengers Act required a bond from the person in charge of the ship before one of these ‘undesirables’ was discharged, and the 1899 Immigration Restriction Act went further banning the idiot, the insane and the contagious.
By the beginning of the 20th century the middle class white birth rate was dropping in New Zealand. The blossoming ‘scientific’ justification of eugenics was taken up by both white liberals and conservatives concerned about consequent fears of losing their moral supremacy. In 1903, W. A. Chapple, a Liberal MP in New Zealand and later in Britain, published an influential booklet, The fertility of the unfit. Sterilisation of the wives of ‘degenerate’ men was his preferred option for reducing the numbers of ‘the unfit’. His pamphlet was welcomed by many prominent men and women. Eugenics became a political cause. ‘Negative’ eugenists sought to limit fertility while ‘positive’ eugenists supported interventionist pro-natalist policies to increase population ‘fitness’.
The 'unfit' encompassed a whole range of 'other' including the following groups described in the language of the time: alcoholics, imbeciles, illegitimate children (and their mothers), prostitutes, criminals, the feeble-minded, lunatics, epileptics, deaf-mutes, the unemployable, the tubercular, the immoral (e.g. homosexuals), anyone from another race, those with incurable diseases such as Syphilis or tuberculosis, and even ‘mouth-breathers'. What they had in common was that they were all 'other' and were apparently breeding faster than the eugenists. Eugenists constructed a monster that gobbled up taxes, and provided images of the 'unfit' for people to measure themselves against.
French-born religious sister Suzanne Aubert had a personal experience of disability and was one of the few to speak out against eugenics in New Zealand. She founded her Home for Incurables in Wanganui in 1899 and, in 1907, opened her first Home of Compassion for all ‘needy’ or disabled adults and children in Wellington.
The 1907 founding of the Plunket Society with its slogan to 'help the mothers and save the babies’ both reflected and propagated eugenic fears about the ‘unfit’. 'The destiny of the race is in the hands of the mothers', wrote founder Truby King. He believed the body was a closed system with a limited amount of energy. The education of girls, in anything other than domestic skills, used up their energy and could make them unable to breed or breastfeed. From his observations of patients as Superintendent of Seacliff Asylum near Dunedin he believed mental degeneration was caused by poor mothering. If only women could be taught the 'science' of mothering the racial decline of the Empire could be arrested. Instead they would breed fit soldiers for the Empire. The less than perfect health of many soldiers enlisting in the First World War increased the Society’s influence.
The Plunket Society popularised the prescriptive ideology of a regime designed to build 'character'. It involved four hourly breast feeding (but not at night), toilet training from two weeks of age, fresh air, rest and no 'spoiling' as playing with or cuddling the child could weaken 'his' character.
But the Plunket Society was just one of many reactions by New Zealand society to those whose difference threatened the majority. Fear of the unfit and wishes to contain the disabled and undesirable had already led to New Zealand’s first public ‘lunatic’ asylum in Karori in 1854. A larger one on the hills above the town of Porirua opened in 1887 and by 1896 its site covered 100 acres. Typically for the time, the Porirua asylum mixed several categories of ‘other’: those with mental health issues, intellectual impairment, alcoholics, elderly and homeless people. For decades, these ‘inmates’ provided large captive communities for doctors and specialists to practice theories and interventions.
Some groups, such as those with vision and hearing impairments, were seen as ‘habilitable’, meaning they had potential as worker citizens if they could be taught to speak or otherwise function in the ‘fit’ world. Hence the establishment of residential schools which separated those with potential from their suspect families.
But certain types of intellectual impairment continued to be linked with ‘immorality’. Girls’ and boys’ homes and farm schools were founded mainly to keep the genders apart and prevent criminality, deviant behaviour and, above all, reproduction. The 1911 Mental Defectives Act carefully classified groups of ‘other’ into a hierarchy of idiots, imbeciles and feeble-minded. Special schools and special classes were provided for those deemed educable. The school medical service was founded to identify ‘defective’ children so they could be sent to the appropriate institutions and the 1914 Education Act made it obligatory for parents, teachers and police to report ‘mentally defective’ children. A residential school for ‘feeble-minded’ girls, Salisbury, was opened in Richmond, near Nelson in 1916.
The new science of IQ testing was enthusiastically embraced by the authorities when it became available. Labels such as high functioning, low functioning and mental age all added to the taxonomy and helped to classify and assign those so assessed.
In the 1920s the government consulted the public in two separate inquiries. A Committee of Inquiry into Venereal Disease reported in 1922 and the Committee of Inquiry into Mental Defectives and Sexual Offenders reported in 1925. The first inquiry concerned the role of 'feebleminded' women in infecting men and causing debauchery and corruption. The second considered 'mental defect' and its link with immorality, as well as prevention and treatment. Segregation, sterilisation, castration, and marriage certificates were remedies suggested for the perceived problems.
A short-lived Eugenics Board was established in 1928 to keep a register of 'mentally defective persons'. Theodore Gray was Acting Inspector General of Health and the Board was under his control. A member of the public wrote a ‘Mother’s Lament’ expressing concern at the proposed travelling clinics which would examine and classify ‘mentally defective' children
"Oh Mother, save me from Dr. Gray
'Cause teacher says he's coming to-day
And if I'm stupid he'll take me away. Oh, Mummie save me from Dr. Gray!"
"I cannot save you, my little child,"
His mummie said and her eyes were wild.
"You belong to the State, you're no more my child!
But Oh, my darling, don't stupid be
Or he'll say we've tainted heredity,
And must be eradicated - you and me!"
There was some discomfort in the community over the Inquiry's recommendations. Most of the more extreme suggestions, such as sterilisation of, and banning marriage with, the 'mentally defective' were dropped from the Mental Defectives Bill of 1928, much to the anger of those like Nina Barrer of the Women's Division of the Farmers' Union. Barrer was an enthusiastic eugenist, using stock breeding metaphors for the perceived problems. She published a pamphlet in 1933, The problem of mental deficiency in New Zealand, where it is written: 'There is increasing in this Dominion a grave national danger that, from the material standpoint alone, is costing the country hundreds of thousands of pounds, while, from the racial or biological standpoint, it is menacing the purity of our national stock. The present depression and its consequent problem of unemployment have been the means of awakening more people to the fact of the increasing unemployable, and the alarming rate of multiplication of the mentally deficient'.
Support for eugenic policies was widespread globally so it was not surprising that in 1939 when a German father asked the state authorities to kill his disabled baby the request was granted. That was the start of the Nazi euthanasia policies. The Nazi doctors killed more disabled children, then the policy spread to other groups which threatened ‘racial hygiene’, including Jewish people. It is estimated that over 200,000 disabled people were experimented on or killed in what is known as the ‘silent holocaust’.
Following the Second World War and the establishment of the welfare state in New Zealand, overt support for eugenic public policy lessened. But many people, including children and adults with an intellectual disability (ID), remained a target of eugenic public policies with a network of state institutions across the country. Busloads of children were delivered to these isolated communities and other adults and children arrived in curtained-off, locked train compartments. Families were advised to not reveal the existence of their sibling for fear of this ‘bad blood’ scaring off prospective spouses. The ‘inmates’ were thus often forgotten by family.
But eugenic assumptions remain today and can be heard anew in calls for the sterilisation of people with disabilities and beneficiaries, pre-birth screening for conditions such as Down Syndrome and in the development of genetic technology. Official discrimination against groups such as refugees can also be considered eugenic.
Perhaps it is time for reflection about why this flawed hypothesis continues to influence public policy.
Dr Hilary Stace is a disability researcher and Research Fellow at Victoria University. She is the author of Gene dreaming: New Zealanders and eugenics Wellington: Professional Historians’ Association of New Zealand/Aotearoa, 1998.
The Troubling Persistence of Eugenicist Thought
Michael Dougherty describes both early and more recent eugenic ideas in the United States, noting the how hard it might become for parents of Down Syndrome babies to allow these children to be born. He suggests the ‘new eugenics’ is unlikely to be overtly racialist like in the past, but will come to us in terms of ‘quality of life’ and ‘health and safety’.
Available online at:http://theweek.com/article/index/268986/the-troubling-persistence-of-eugenicist-thought-in-modern-america
Eugenics wasn’t always a dirty word
Calum MacKellar names some famous English and Scottish figures from the past that promoted eugenic policies. He reflects on past eugenic practices and how it took only a small shift in attitude about ‘worthy lives’ to lead to the crimes of Nazi Germany. He warns us to remain vigilant and to uphold and protect ‘the important inherent equal dignity and value of all human beings.’
Available online at: http://www.mercatornet.com/articles/view/eugenics_wasnt_always_a_dirty_word
A World Cleansed of Imperfections?
This article by Max Wind-Cowie dismantles the ‘choice’ argument used by those who promote abortion and euthanasia for the reason that individuals should have the right to decide for themselves. He suggests that ‘what starts out as a ‘right’ soon becomes an expectation and the ‘tradition of the sanctity of life is replaced with a new tradition of utilitarian eugenics.’
Available online at: http://www.catholicherald.co.uk/commentandblogs/2014/08/21/dawkins-has-done-us-a-favour-by-highlighting-how-dangerous-our-culture-of-choice-really-is/
Compassion as a moral duty
Gerard Aynsley
In his extensive study, 'A Theology of Compassion', Oliver Davies describes compassion as "the voluntary sharing of the fate of others in order to be present with them in the time of trial"1 and as involving the "interweaving of self and other"2. Also, drawing on the work of Martha Nussbaum, he points out the three-fold nature of compassion as a combination of the cognitive (seeing another's distress), the affective (being moved by it) and the volitional (doing something about it)3. These descriptions help place compassion within the realm of ethics – as a response and quality that ought to be exercised and displayed. Placing 'compassion' within an ethical framework is required if compassion is to be regarded as an important and necessary force in our lives. The alternative is to regard compassion as simply a psychological disposition, or, worse, entirely subject to circumstance and chance and, as such, excuse ourselves from responding with the proper kindness to another person's suffering.
In recent years there have been numerous studies that show up the fickleness of human behaviour; proposing, for example, that being in a hurry or not, or having a little bit of good luck will have more bearing on behaviour than ethical principles4. Similarly, Auckland-based psychologist, Nathan Consedine, takes the rather pessimistic view that compassion is "part of our evolved psychological make-up" and that "caring for people who don't deserve it is inefficient from an evolutionary perspective" (North & South, September 2015, p.61). It may well be that human beings are fickle, but to excuse the requirement for compassion on the grounds of temperament or circumstance seems to diminish something important about our humanity. Human beings are moral beings and, as such, have the capacity to rise up to what ought to be done. This is what ethics teaches us.
The idea that compassion is an ethical characteristic has, traditionally, been rejected. It was seen as too closely aligned to our emotions, and so too irrational. Plato considered feelings of pity to be undesirable and the Stoics saw pity as "a weakness of the mind"5. Kant insisted that acting from sentiment – even if it leads one to do a good deed – has no moral worth, and Nietzsche takes things a step further, regarding compassion as a vice, believing that "suffering is spread through compassion"6. Nevertheless, that we have a duty of care for others is supported by most ethical traditions and with some rethinking it is possible to construct an understanding of compassion – incorporating the cognitive, affective and volitional dimensions – as an important ethical category.
First, as noted by Davies, there needs to be a place for affectivity. There have been some important recent works that develop this theme. Justin Oakley, for example, in "Morality and the Emotions"7explains how the affective dimension does have a place in moral decision-making and because of the relationship between our affective and cognitive capacities we can exercise some control over our emotions.
Secondly, there needs to be a rethinking of the self; a "radical de-centring of the self"8and a letting go of a notion of the moral agent who is traditionally "presented as though they were continuously rational, healthy and untroubled"9. This includes abandoning the notion of the 'sovereign' self who sees him/herself as the source of all knowledge and the source of the moral law and action. From this 'superior' stance the other person is too easily seen as a mere 'object' of my pity. Compassion, on the other hand, requires of me to begin with the other person in his or her uniqueness and to enter into their vulnerability; all the while recognizing that it is their suffering and not my own. As Alasdair McIntyre points out, human vulnerability goes hand-in-hand with our dependence on each other and this is the moral landscape in which compassion is experienced10. This shift in thinking about the self and the other is required if compassion is to be a legitimate ethical standpoint.
To take the other person in their vulnerability as the starting point is to take an imaginative step and so, as David Hume puts it, "to feel a sympathetic motion in my breast, conformable to whatever I imagine in theirs"11. The imagination enables us to grasp what is before us and to also 'see' more than what is materially present – e.g., we may first see a person drop a pile of papers, but the imagination enables us to also 'see' the person's distress and so 'see' the situation as one that requires a compassionate response.
Finally, ethics involves the conscious decision to transcend inclination and to do what is right. To be moral is to rise up and do what is right regardless of whether or not we like the person who requires our help, or we are in a hurry, or whether or not we happen to be having a good day. Unless compassion is something we aspire to as a matter of moral obligation we will never be capable of responding with the kindness and care that is so often needed.
Rev Dr Gerard Aynsley is a parish priest in the diocese of Dunedin. He holds a PhD in philosophy from Monash University in Australia.
----------------------------
[1] Oliver Davies, A Theology of Compassion (London, SCM Press, 2001),12
[2] ibid. xix
[3] ibid. 18
[4] Google, for example, “The Good Samaritan study” or “The dime in the phone booth study”.
[5] cited in Oliver Davies, 235
[6] cited in Oliver Davies, 239
[7] Justin Oakley, Morality and the Emotions (London, Routledge, 1992)
[8] Oliver Davies,17
[9] Alasdair McIntyre, Dependent Rational Animals (Chicago, Carus Publishing Company, 1999),2.
[10] Alasdair McIntyre, Dependent Rational Animals
[11] David Hume, A Treatise of Human Nature (Oxford: Clarendon Press, 1967), 386.
“When we walk to the edge of all the light …”
Sinéad Donnelly
I am a palliative medicine doctor and recently I have returned to practice acute hospital medicine. As professionals serving others, doctors train to be aware of their human reactions to events, interactions and people. It is part of the discipline of being a doctor. From my years of experience I believe this is fundamental to good healing practice, resilience and growth. As Dr Tom Mulholland says in the article: “You have to live in the moment and practice mindfulness.” (North & South, September 2015, p. 62).
One might expect that Palliative medicine would be one of the principal areas for “compassion fatigue”. Yet it is also potentially a nurturing place for staff, aware of each other and kind to each other. Although compassion is called from us as doctors, nurses, chaplains and allied health staff, we also receive from each other. This mutuality sustains us. This does not automatically happen in a palliative care team, community or unit. It needs to be a conscious value of the team, attended to on a daily basis. We cannot be compassionate and kind to the patient if we are not kind to one another. A buoyancy of life is thus created which sustains us. In this space, although serving those who are dying and witnessing untold grief, we support each other.
Mr W (89) came to the Emergency Department during the night. The night registrar summarized the patient’s story – shortness of breath, attributing it to exacerbation of chronic obstructive airways disease. I met Mr W Saturday morning with Ella the registrar for that day. He was returning from the toilet, sitting now on the side of the bed and breathless. I was unsure how different this was from the time of his admission 6 hours before. I thought he had heart failure. We asked the nurse to give him frusemide. I thought the tracing of his heart (ECG) suggested ongoing damage to his heart. We continued on seeing other new patients.
About an hour later, an alarm bell rang in the Medical Assessment Unit - Bed 23 - Mr W’s bed. The nurse was there. He had just died. I decided immediately that CPR was not appropriate. Ella consoled the nurse who was upset that she had left him just before he died. I phoned his daughter as the identified contact person. She cried, clearly surprised and distressed. She said her mother was just then getting his clothes ready, preparing for him to come home that day.
They arrived about two hours later. His wife in a wheelchair, crying. She was afraid to go into the room where he lay. I encouraged them all to enter the room. Mrs W lifted herself out of the wheelchair by his bedside, leaning over him, almost lying on him, weeping, hugging him, talking to him. My heart was breaking now. The image of this small lady leaning over this man, her husband of 65 years.
I could not understand why I was so upset after 22 years in Palliative Medicine. I think it is because in acute medicine, unlike Palliative Medicine, you are so close to the front line; because in acute medicine you do not have your Palliative Medicine armour on. The chaos and uncertainty, the surprise factor of acute medicine, render me exposed and vulnerable. “Palliative” comes from the word “pallium” to cloak or shield. But now I know “pallium” used to shield me.
The poignancy intensified. I sent them a card offering my condolences. Mrs W responded, phoning me to request a meeting. “Oh dear,” I wondered ... A week later we sat again in the same room where she had hugged her dead husband. Mrs W said “The nurse phoned me that morning, said S wanted to speak to me”. As the nurse brought the phone to his bedside, “the battery died”. So they never spoke. She presumed he wanted to tell her to bring in his clothes, that he was going home. So she started to get his clothes ready. Now she wonders did he want to say he loved her. “Is that what he wanted to say…?”
Mrs W thanked me. They all thanked me. My heart was breaking. Acute Medicine – no place for the faint hearted.
Would repeated encounters like that with Mr and Mrs W wear me out and lead to compassion fatigue? Not necessarily. In this story there is a mutuality in the exchanges between us, a give and take, an ebb and flow, an emptying and a filling. I am called to be aware, be alert to all that is happening to the patient, the family and to myself. In that space of being fully present, I am emptied and I am filled.
“When we walk to the edge of all the light you have and take that first step into the darkness of the unknown, you must believe that one of two things will happen: There will be something solid for you to stand on, or, you will be taught to fly.” “Faith” by Patrick Overton - “The Leaning Tree”
Dr Sinéad Donnelly is a Palliative Medicine and Internal Medicine Physician in Wellington.
Compassion Fatigue in Nursing
Jo Walton
There is a sentimental idea in many of our minds that nurses are the epitome of caring professionals: gentle, kind, friendly, compassionate, empathetic, capable and calm. Certainly this is an ethos that the profession attempts to live up to, and many of us would also add that nurses need to be skilful, articulate, courageous, ethical and resilient. The expectation that nurses will provide compassionate, respectful and trustworthy care is spelled out in the profession's Code of Conduct. The Code is framed around core values of respect, trust, partnership and integrity, and although the word 'compassion' is not used, it is inherent in the whole code, and nurses know they have a professional responsibility to live up to this standard.
In spite of expectations and codes sometimes nurses slip up and may behave in ways that are less than ideal. Sometimes their heart simply isn't in their work. As human workers and human beings, nurses, like everyone, are fallible. The very idea that nurses might lose compassion, become tired of caring, be at any time unable to give unconditional regard to patients and families is actually a rather frightening one. Nurses are people on whom any of us might (and do) depend in times of extremis, when sick, frightened, in pain, vulnerable, perhaps alone, whether as patients or as relatives or friends of those in need of care and protection.
Why would things go wrong in this way? I suggest there are three factors at play when compassion fatigue appears amongst nurses: the nature of nursing work itself, work demands and overload, and systems and institutional values that operate at odds with the values of nurses themselves.
Nursing work involves extensive elements of emotional labour. In their everyday work nurses deal with sensitive and intimate aspects of life, much of it in the domain of the private, often invisible and unspoken. While it is quite normal to discuss the fact that patients and families are troubled by fear, grief, sadness, it is less common for nurses to talk about the abject emotions they experience themselves. Anger, surprise, fear, dread, sympathy, joy are acceptable topics, but revulsion, repulsion, disgust, horror, terror, and libidinous arousal are not so easily slipped into a conversation, even an earnest one.
The mechanisms nurses employ to deal with the abject, and the fear and the anxiety that their work entails, have been explored both psychoanalytically and sociologically. Over several decades the received wisdom that nurses ought to conceal all their emotional reactions has been changing, and nurses now may (at times) laugh or cry with patients and families in their care. Nevertheless a full range of emotional expression would derail professional comportment and be counter to the value systems that hold the profession together. To work at their best nurses must hold their emotions in.
At the same time, nursing work itself is emotionally laden, driven as it is by the desire to help, to serve, to tend, to be compassionate (a voluminous literature backs this idea), in combination with an interest in things medical and mysterious, psychological and deep, bizarre and exotic and dangerous.
But it is not just disease and disability, sickness and health that nurses must deal with. There are also different needs and expectations of patients and the increasingly production-conscious environment in which nurses work. As financial pressures squeeze our health systems tighter, and the pressure for increased work volumes increases, nurses often feel they must ration care. Care rationing means that they must decide whose needs are most urgent and what care can and must be left undone. It means deciding what words can be left unspoken, what comfort can wait until later. It is a dreadful situation for nurses, patients and families to be in. While nurses are balancing unseen demands, patients and families are experiencing things rather differently. Time drags for those who are ill or waiting, but not for the staff who are preoccupied with getting everything done, who know that they must balance this patient's needs against that one's, this emergency over that potential problem.
In situations such as this nurses can feel overwhelmed by helplessness, frustration, tiredness and tedium. Lack of insight develops and ordinariness takes over. People who do not feel valued, who do not have the resources they need, who feel helpless to change things do not make good, compassionate, care workers. Emotional control can break down, and a desire not to care can creep in, when the load becomes too great to bear.
Nursing is hard work. Physically, psychologically, emotionally and spiritually. A firm sense of one's own values, driven and backed by a strong spiritual faith is some defence against failure, provides some insurance, some inoculation in terms of what is right and proper and why we chose this work. Compassion fatigue is a sign that health workers themselves need some help, care and relief. It is also a 'canary in the mine' signal that a larger system is in serious danger.
Jo Walton is Professor of Nursing in the Graduate School of Nursing, Midwifery and Health at Victoria University of Wellington and Deputy Chair of the Nursing Council of New Zealand.