"When Did You Last See Your Father?"

Introduction

The philosophy of palliative care and its delivery through hospice care must take account of the ever changing nature of family life and living arrangements in New Zealand. While most health care services in New Zealand struggle to care for the family, partly because of dominant funding models, the family-patient has always been regarded as the primary 'unit' of care for hospice since its foundation in New Zealand thirty years ago. Indeed palliative care is understood and is delivered within the context of family broadly understood.

After outlining some of the influences surrounding family life in New Zealand I will examine the concept of a 'framing event' which is a product of a particular family system and personal narrative and is also influenced by the wider cultural realities that surround family life. I define the 'framing event' as the particular way or lens through which an individual experiences his or her family. To a greater or lesser extent this 'framing event' is the key to understanding the needs of the terminally ill and their family at the end of life.

The 2007 movie, When Did You Last See Your Father? provides the inspiration for this reflection on the changing nature of family life in Aotearoa-New Zealand, and the subsequent impact of these changes on palliative care delivery by Hospice New Zealand.

Understanding Family in New Zealand

Sharron Cole noted in her article that not all definitions and terminology adequately capture the current reality of family life. What constitutes a family? In the Judeo-Christian tradition a family is comprised of a husband and wife and their children. In his 1994 "Letter to Families", Pope John Paul II described the family as "the primordial and in a certain sense sovereign society." The Catholic Church considers such an understanding of family to be the moral and ethical cornerstone of a just society. Many others in New Zealand society also hold this definition of family as a cultural, religious and societal ideal.

That said, numerous Government Reports and statistical information confirm the changing reality of family life in New Zealand. For example, the February 2007 Families Commission Report, Moving On: Changes in a Year in Family Living Arrangements gives five definitions of family type, namely, couple only; couple with children; one parent with children; not in a family nucleus; and, dependent children. Couples are defined as married, de facto, and/or of the same sex. These definitions are reflected in recent statistics.

The general marriage rate has declined in recent years. In 2008 there were 21,900 marriages in New Zealand, 2000 of which were registered to overseas residents. A further 327 civil unions were registered in the same period with 78% of these being same-sex unions. Although some 9,700 orders for dissolution of marriage were granted in 2008 the actual divorce rate has declined in recent years to 11.3 per 1000 marriages in 2007. People are marrying later. In 1971 the average age for marriage was 23.5 years for men and 21.2 years for women while in 2008 the average age was 32.5 years for men and 30.2 years for women. Increasingly marriage is described by some commentators as a "choice rather than a social norm."

So-called 'blended' or 'reconstituted families' are increasingly more common with the result that family living arrangements are multifaceted and frequently complex. Couples who have remarried may have children from a number of previous relationships and these children may or may not be members of the current household where their parent[s] resides. Grandparents may also be actively raising their grandchildren while simultaneously caring for their own aged parents. These couples are sometimes referred to as the 'sandwich generation'.

The impact of all these realities at the end of life is considerable, not least for hospice and palliative care teams. The reality of geographical isolation and distance between family members compounds this challenge not least in the establishment of goals of care for the terminally ill and in communicating these goals effectively to the patient's family.

A further and foundational influence on family life in New Zealand is culture which can be defined as the core values of a society; a framework of values; a world view; or as Pope John Paul II once referred to it as, "the first voice of the sacred". In speaking of the unique cultural heritage in Aotearoa-New Zealand the 2001 Royal Commission on Genetic Modification noted that while New Zealanders drew their cultural "values from different sources" they also "hold values in common."

Different cultural perspectives can always be worked out where there is time and a willingness to talk. The Royal Commission summarised two principle approaches to ethical decision making – Pakeha and Maori - which provide rich insight for working with families in palliative and hospice care not least because they help us understand how different cultures have different starting points and bring different worldviews to discussions of an ethical or spiritual nature.

A 'Pakeha approach' to ethical decision making has four key elements:

• A clear statement of the values to be used as criteria (our common core)
• Full information on the specific data relating to the case to be decided
• A holistic approach that looks at both the data and the values in a connected manner
• Appropriate participation by stakeholders (all with an interest) in the decision making process."

In this model ethical decisions are reached at the intersection of values with the specifics of a particular situation.

'Maori decision-making' is traditionally characterised by the following cultural values which make no distinction between process and outcome:

• Consensus is preferred, even if it takes extra time
• Emotion is expected, vented and tolerated... Reconciliation is part of the way forward to the consensus decision.
• Silence is important. What is not said and who does not speak are equally noted." [2001: H1:28-29]

In this model ethical decisions are reached at the meeting point of the spiritual and natural worlds. Interestingly the common ground in the two approaches flows from spirituality and the specifics are located within the material dimension.

The shared way ahead then is the combining of core values within a situational context. Invariably different models and different processes for reaching consensus can cause conflict when Maoridom, for example, prefers to have a body embalmed and reunited with the whanau on a Marae as soon as possible after death. Recently the New Zealand Justice Department has established a mediation service to resolve such issues but that is not always viewed as an adequate cultural response especially given the issues around the availability of mediators.

While not developed here, the interface between the legal and ethical issues at the end of life and other cultural issues can be further complicated. These complexities require careful and sensitive processes when, for example, the needs at the end of life for migrant cultures and the intergenerational preferences between an individual's 'culture of origin' and his or her 'acquired culture' are considered.

Understanding the needs of the dying patient

While many cultural, social, spiritual and institutional dimensions influence patient care at the end of life and, in turn, reflect changes in family life in New Zealand, often there is a more specific issue for the terminally ill patient and his or her family that requires addressing. This specific element, described here as a 'framing event', is not always overt. It can require considerable skill and wisdom on the part of the palliative care professional if he or she is to understand its influence on the patient's goals of care and if the healthcare professional is to transcend the increasingly complex family dynamics at the end of life.

Literature and film provide rich insight into the potential and possibility for healing within the human narrative, particularly at the end of life. For example, the 2007 movie, When Did You Last See Your Father? reminds the palliative care team member that medicine and nursing are a combination of science and art and both skills are needed in end of life care.

The film is based upon writer Blake Morrison's autobiographical novel of the same name – a novel which explores the deeply flawed relationship between Blake and his father and does so in the light of his father's terminal illness and subsequent death. The kaleidoscope of emotion, unresolved memories and historical conflicts in the film poignantly underscores the reality and complexity of caring for the terminally ill patient and his or her family. For Blake Morrison the flawed relationship and the reality of being 'stuck in childhood with his father' becomes the 'framing event' for his father's terminal illness and, equally, for his inability to support his mother during his father's illness. It is this very complexity that provides the potential for healing and a certain restoration for Blake Morrison in his relationship with his own wife and children. One senses that such insight only comes for him, however, after his father had died and not during his illness.

For the family members of a terminally ill patient there is frequently a 'framing event' through which the bond between parent and child is interpreted and understood. This bond may be one of mutual respect, admiration and a source of genuine joy and hope, or conversely the 'framing event' may be so painful that it leaves a bond best described as one of regret, silence and semi-permanent frost. Frequently it is linked to a patient's culture and a life-changing event such as migration. It can be exacerbated by a lack of nurture or enhanced by mentoring and presence.

However it is understood, the reality of a 'framing event' serves as a reminder to the palliative care team that ethical issues are always embedded within a larger and multi-faceted context. To a greater or lesser extent this multi-faceted context will give particular shape to the specific ethical issue in clinical practice. Indeed at the end of life the 'framing event' assumes even greater importance than the influence of the prevailing cultural values specifically because the issues at the end of life are essentially spiritual.

Dame Cicely Saunders, the foundress of the modern hospice movement, once observed that "people can move quickly in a crisis, particularly patients who are living with terminal illness." The converse is also true. While members of an extended family may be able to act as intermediaries and 'midwives' enhancing communication, not infrequently there is no great resolution between parent and child and as a consequence there can be considerable difficulty in establishing and communicating these goals of care. Frequently the disappointments and misunderstandings of a lifetime have coalesced into permafrost by the time an illness becomes terminal. This reality leaves the therapeutic window of possibility for healing largely shut, or at least difficult for the healthcare professional to recognize, and even harder to utilize. This scenario is made even more complex when one considers the fact that palliative and hospice care in New Zealand now increasingly occurs within a much shorter time framework and with a much greater patient-whanau turnover. These complexities underscore the challenge of combining the art of medicine and nursing with the best of medical and nursing practice.

Conflict may not end with the death of the patient but may continue with the making of funeral arrangements for the deceased and these tensions can then impact negatively on the care that hospice gave the family and patient. The power of the 'framing event' is further illustrated, positively and negatively, by the "canonisations" or inappropriate remarks that regularly take place in eulogies at funerals. While these remarks increasingly reflect a lack of awareness and familiarity with ritual they frequently highlight a glossing over of unresolved tensions in the relationships between the deceased and their family and associates. The presence or absence of a religious or faith dimension and an undeveloped or diminished framework for the existential and spiritual will therefore inevitably impact on a family's ability to process grief, loss, illness and death. Similarly a lack of familiarity with death and dying due to the increasing hiddeness of death in New Zealand and a perception of hospice as a place to die rather than a place to live can also impact adversely on patient-family care at the end of life.

Conclusion

Prevailing cultural norms reflect an understanding of family and, in turn, shape this understanding. Similarly, every person is the product of a particular family and culture. Within a patient's narrative is often a 'framing event' that contains the potential for healing in end of life care. The 'framing event' of family for the terminally ill and his or her family is as important as understanding the changing nature of family life in the wider society and its inevitable impact on healthcare delivery at the end of life.

Doctor Michael McCabe is the Director of The Nathaniel Centre