“DEATH is SOMETHING to be AVOIDED”

 

 

 

 

Carolyn Cooper

PhD candidate

Swinburne University

 

 

 

Supervisor:

Professor Susan Long


 

“DEATH is SOMETHING to be AVOIDED”

 

 

death has been with us for as long as we have lived.

 

can we confront our own death as we live?

 

“DEATH is SOMETHING to be AVOIDED” said a well known Australian Catholic-bio-ethicist talking with a radio commentator. This conversation related to the legally and politically debated death of Terri Schiavo which occurred in USA on 31st March 2005.

 

Terri Schiavo suffered a cardiac arrest at 26 yrs of age in 1990; as a result of this event Terri was diagnosed as having irreversible brain injury. This injury left her unaware of her environment, unable to communicate with or recognise her loved ones and incapable of fulfilling the activities of daily life, including swallowing. As a result of her brain damage she was fed through a PEG tube (a percutaneous, entero-gastric tube). From that time controversy raged between her husband-guardian and her parents with multiple legal and political interventions about whether Terri was in a “persistent vegetative state” and whether she should be allowed to die this would occur if the tube was removed.

 

It is alleged that Terri and her husband had prior conversions about end-of-life planning, and, it was his understanding that she would not have wished to continue to live in this way. He sought to have the feeding tube removed commencing in 1998. On many occasions the feeding tube was removed, to be replaced after further legal or political intervention. The PEG was finally removed on 18th March 2005; it was not replaced to resume feeding. The Federal Court did not sway in its decision, it blocked subpoenas, the involvement of the US Congress, a signed document from President Bush and a submission from the US Court of Appeals, Terri died on the 31st March 2005.

“WHO  DECIDES?”

 

 

“Who has the right to make life and death decisions for others?”


“DEATH is SOMETHING to be AVOIDED”

 

 

Who has the right to consent to or refuse treatment for a current condition?

 

a

competent adult

 

 

 

If I become incompetent who will fulfil

MY treatment CHOICES?

 

 

in AUSTRALIA

the decision makers are

 

 

a guardian, & an Enduring Power of Attorney (medical)

 

“DEATH is SOMETHING to be AVOIDED”

 

How have I come to this topic?

I come to this topic as an Emergency Physician working in a busy Emergency Department of a metropolitan, tertiary referral centre with a background of socio-analytic learning with AiSA and a current PhD candidate of Swinburne University.

 

Why explore this area – vulnerability / autonomy?

At 0300 a cold, wet, winter’s morning

Metropolitan Ambulance Service notify the Emergency Department from a N/H

96yr old lady is transferred by Intensive Care Ambulance - for resuscitation.

On arrival - a frail little old lady, curled up on the ambulance trolley

Desperately short of breathe, with gurgling respirations, she is drowning in fluid

Hand over: bed-bound, demented, unable to communicate, dependent in all activities

P/H: repeated episodes heart failure, recently precipitated by a urinary infection

We could intervene, insert lines, tubes and monitor every cardio-vascular parameter

We relieve her symptoms.

She dies with us, not with those she knows, those who have been caring for her. 

There is nothing familiar for her; visually, sounds, smells, touch, temperature.

 

What is happening here?

Patients, entirely dependent, demented, bed-bound, incontinent, assistance all ADLs

Transferred ED for resuscitation–is the expectation restoration of good health

The patient will not recover from the underlying condition: heart failure / lung dse

Quality of life will not improve, but continue to deteriorate

What is the burden to the patient? / What is the benefit to the patient?

 

My assumptions:

The emphasis is on quantity of life rather than quality of life

Death is an unnatural event which must be avoided

Current medical management can ward off death

Fear of death - whose best interests are being served?

 

What is important here?

Deliberate before medical intervention occurs rather than crisis intervention

Being mindful of the vulnerable

Respecting individual choice & Dignity in Death

 

The type of scenario is a regular occurrence.

 

 “DEATH is SOMETHING to be AVOIDED”

 

 

How could this practice change?

 

 

What is end of life planning?

 

 

End-of-Life Planning is a process that enables an individual to develop an understanding of their medical condition with their General Practitioner and then explore their own healthcare wishes with family, friends and the medical practitioner with the intent that care at the end of life reflects their personal values, objectives, religious and cultural needs with in a legal framework.

 

The purpose for the process is to ensure that the individual’s end-of-life plan has been made explicit to and with the person of their choosing so that at a time when the individual is unable to communicate their own wishes because of cognitive or neurological incapacity, a document fulfilling the ethical and legal guidelines is available. These treatment choices for end of life can then be realized respecting the autonomy of the individual and honouring this individual’s determination. 

 

The legal term for this person is Enduring Power of Attorney (Medical).

 

“In Australia, an assessment of a patient’s competency involves ascertaining whether the patient is able to:

 

>>      express a preference for or against a particular form of treatment

>>      make right or responsible decisions regarding their treatment

>>      provide rational reasons for their decisions

>>      recognise decisions that are irrational or unwise, and

>>      understand all the major implications of a proposed course of treatment”        

 

 

 

Is end of life planning occurring in this community?
“DEATH is SOMETHING to be AVOIDED”

 

AUSTIN HOSPITAL: Emergency Department patient questionnaire: May 2002

ALL  ADULT Patients = 1116: (20-99) yrs attending the Emergency Department

 

Clerical and Medical component of the questionnaire

 

Clerical:         age, sex, accommodation, referral pattern, ethnicity, religion, etc

CLERICAL DATA

Variety

Total

Completed

Incomplete

Referred from

8

1116

1113

3

Accommodation

9

1116

1102

14

Country of Birth

50

1116

1072

44

Culture

48

1116

880

236

Religion

22

1116

1033

83

 

 

 

Medical:        reason for attendance, admission, POA, ACP, EPOA (medical), etc

MEDICAL DATA

Options

Total

Yes

Incomplete

Power of Attorney

Yes/No

1116

74

802

Enduring POA (medical)

Yes/No

1116

40

802

Health Care Planning

Family/GP/Aged Care/ Hosp

1116

30

795

Advanced Care Plan

Yes/No

1116

6

807

 

 

 

 

 

NO, end of life planning is not occurring in this community!

 

 

 

 

Why not?


 “DEATH is SOMETHING to be AVOIDED”

When I came to this research my plan was to work with the General Practitioners of the Community in the setting of an Aged Care Facility. I approached 2 significant aged care organizations to ask them to consider this research.

 

Aged Care Organization 1

Speaking with the Quality & Research Unit

          We do not believe the research is going in a direction we wish to pursue

          We are concerned about the method; in a business school?

          We have a “well” model of care

Our medical model is to defer to the decision maker.

 

Speaking with the CEO of this organisation:

We are undergoing accreditation; we don’t have time or resources.

Internal cultural issues, relationship of staff to patients, maturity of staff

This is cutting edge research; how do we maintain control, fear: emotional safety?

How do we manage the process of patient’s being involved in decision making?

How do you raise these issues?

 

Aged Care Organization 2

          We are a conservative organization and this is controversial.

           We do not have the resources to do the work.

 

Regional Division of GP meeting April 2003

          We will finance the time with the GPs; this research is important.

How many GPs do you wish to interview?  - (10-12)  =  13

          When do you want to start? - as soon as possible =  organized by May 2003

 

GP questionnaire:

13 General Practitioners,

Demographics:  Age: (40-75)yrs, Sex: M=7, F=6,

Ethnicity:  A/S, Australian, Macedonian, Jewish, Sri Lankan, English, Indian-Finnish.  Religion:   Catholic, Protestant, Jewish, Moslem, Atheist, Agnostic, CofE, None.

Yrs of practice:   (8-50), End of Life plan: +/- 4

Primary task of the GP, Dr-Patient relationship, Education, Role, EPOA(Medical) etc

 


Society to the General Practitioner:         KILL Death!!

The Shorter Oxford English Dictionary defines society as ‘the system or mode of life adopted by a body of individuals for the purpose of harmonious co-existence or for mutual benefit. The aggregate of persons living together in a more or less ordered community, a number of persons associated together by some common interest or purpose, united by a common vow, holding the same belief or opinion, a collection of individuals composing a community or living under the same organization or government.’ etc

 

Cultural Influences

Australian society for the General Practitioner will encompass the community in which he lives and works with its traditions, customs, mores and its inherent philosophy. This society includes the cultural traditions that have become a part of the Australian way of life.

 

In questioning in this society, I am confronted by a number of idiomatic phrases that have become the reality of the society, not just a myth, or flight of fancy, but a norm, characteristics to be lived by. 

 

a fair go,                                    let sleeping dogs lie

                   she’ll be right mate,                      don’t let the side down,

                   tomorrow’s another day,                just get on with it

don’t rock the boat

 

This is the vernacular that comes with the Australian culture, the ‘aussie’ who never gives in, the ‘aussie’ who does not show his feelings?  But this is also the ‘aussie’ who would prefer to silence the provocateur, “let sleeping dogs lie”. When issues become too difficult, “she’ll be right mate”, “let sleeping dogs lie” don’t create trouble. It is as though it is more important to do, than to question – “just get on with it”. Even if this is getting on with life for “tomorrow is another day”.

 

It is not possible to think or speak about our own dying or death. For the General Practitioner to speak about a patient’s dying or death would be confrontational; this must be avoided. In this mode of being the anxiety and dread of dying and death are split off and a ritualistic process and pattern of interacting is used “she’ll be right mate” in an attempt to maintain a semblance of control and to contain the anxiety, fear and personal panic.

 

It does not feel as though it is possible to live with this fear of death as the enemy of life as a rational reality. Death is the enemy – KILL death. As a society it can only be lived with if we, with an unconscious defensive activity, reframe death, it becomes a myth, and, in grandiose fantasy as omnipotent beings we can overcome death. Or we avoid death by repression, it needs to be disregarded and denied, so it can no longer create anxiety.

 

Hypothesis:

Generally speaking the Australian society fears death; and the General Practitioner, as a member of this society, is consciously and unconsciously influenced by the attitude of society, he lives in this same fear, he wants to avoid and deny death and as a consequence he may not take up his role and its attendant authority to end-of-life plan with his patients.

 

Miller and Rice in 1975 wrote elaborating the issue of the impact of societal values on the individual in an enterprise. This same aspect applies to the General Practitioner working within the Community. The embedding of this individual in the culture of society ensures he will exhibit the same tenets of society.

“The human resources available for an enterprise come from the society in which it is located. The members of the society create its culture and hence bring to the enterprise in which they work the cultural constraints of their society. Environmental constraints are therefore inevitably built into enterprises and thus become part of the internal culture.”[1]

 

ANGLO-SAXON BACKGROUND

These excerpts from the General Practitioner interviews identify his impression of the feelings about dying and death of the Community in which he works.

The Australian society is afraid, we fear death, we are scared of it because we do not know, I do not mention it to patients because I believe the patient would think I was saying they were about to die.

and,

We are terrified of death as a society, we do not want to think about it, we can not talk about it, we can not be with death, we keep our children away from it; it is very hard for people. I do not believe we want to think about death and dying, it is not in out mind, there are no thoughts, there is no conversation, and we do not know how to talk about death and dying.

and,

The Australian society does not deal with death & dying it remains one of the great taboos. In the past we were fatalistic and more accepting of the inevitable outcome but this has changed we have become more secular and appear to be more afraid. This fear of the unknown is huge, the fear of being alone, of a void or the sense of a bottomless pit. Some people will say they are not afraid of death but of the process of dying.

 

There is also another change which is inexplicable which is commented upon by this General Practitioner.

Why does this generation hide death and dying from children, in previous generations the movies depict the time of death as a time that the family gathers around the bedside of the ill person and the death is acknowledged by all? Perhaps death was more common place and accepted by all, the life span was shorter, there was not the technology, pharmacology and the interventions of today. We are trying to delay and avoid dying and deny death.

 

As an individual, there was the potential to learn from experience within the extended family, but our cultural patterns have changed significantly, we have adopted living as a nuclear family, patterns of emigration have also changed. Both of these can result in limited personal exposure to the process of aging and illness. Death has become an uncommon event it is unknown and therefore to be feared.

 

Gordon in writing about current social structures in ‘Dying and Creating’ states;

“There is the fact of the dramatic reduction of the family unit. The extended family, which included grandparents, uncles, aunts, and cousins, has now shrunk to the small unit of parents and their children. Add to this the increase in social mobility and the housing of people in huge, anonymous, urban clusters, which deprive the individual of a meaningful neighbourhood group, and you get a society made up of people who have very few emotional ties linking them to each other.

The rarity of such emotional ties then diminishes a person’s possibility of being moved and affected by the loss of any of them.”[2]

 

This further limits personal learning about vulnerability, loss and emotional pain.

 

Another aspect that also diminishes the need to communicate thoughts and feelings is;

We make a lot of assumptions that the other person will be thinking like I am therefore I do not need to ask.

 

 


MULTI-CULTURAL INFLUENCE

But there is also acknowledgement of a change occurring within this society because of the multi-cultural nature of the Australian population. The General Practitioner can not make the assumption that the individual patient will have the same set of cultural influences to guide his behaviour.

 

But as stated by these General Practitioners,

Because we are a multi-cultural society dying and death will be dealt with differently across the cultures, this can be confusing because although I may appear to be Australian I may revert to my own cultural upbringing at times of death and dying; there is a lot of ritual around it.

and,

As a multi-cultural society there are many aspects to our societies dealing with death and dying.

 

Does not knowing how the individual will respond, the multi-culturalism of Australia, increase the degree of discomfort and anxiety for the General Practitioner? In a conversation with the individual patient is the General Practitioner less likely to talk about a provoking issue like dying or death because he feels less able to anticipate the response. 

 

Sharp in his book ‘Living Our Dying’ states that;

“The problem in seeking comfort is, by doing so we cannot look upon the here and now with openness… And if we are dedicated to comfort no matter what, when we come up against pain of any kind, we are going to turn the other way.”[3]

 

This is the setting of the General Practitioner in the multi-cultural setting for as this excerpt states,

Some cultures have extreme fear.

 

Talking with the family group seems to allow the General Practitioner to distance himself from the intimate relationship of the dyad. Depersonalisation with separation from the feelings, allows the General Practitioner to maintain a professional demeanour and defend against this fear.

Some ethnic groups have more difficulty, in all ethnic groups it is much better to talk together with the family.

and

In some cultures ritual and community support provides assistance.

 


PRIMARY TASK for the General Practitioner:         

Royal Australian College for General Practitioners

The academic and regulatory body for General Practice in Australia is the Royal Australian College for General Practitioners (RACGP); the College defines the nature and scope of General Practice in accord with the contemporary needs of the nation and the General Practitioners. As a College, it sets, promotes and maintains the standards for clinical practice, education, training and research for high quality General Practice, and, as a regulatory body it accredits individuals to practice within the specialty of General Practice and upholds the maintenance of the high standards of conduct within the specialty. [4]

 

Definition of General Practice in Australia

The primary task of “General Practice is to provide universal unreferred access to whole person medical care for individuals, families and communities. General practice care means comprehensive, coordinated and continuing medical care drawing on biomedical, psychological, social and environmental understandings of health.”[5]

 

In our regulated, economically driven paradigm of health care for today we are given an expansive and altruistic model of medical care that encourages the General Practitioner to approach their specialty from an holistic perspective, a notable model. To provide care that is accessible to all, involves a concern for the whole person, an approach to patient care that is integrated for the patient within the context of their own environment and situation.

 

This definition communicates a quality of care that is comprehensive and inclusive, a model of care that aids the integration of the individual, their illness and their life’s processes within society, it encourages the enrolling of the individual to the recognition and then potential acceptance of an organised healthcare programme with continuity of care that assists and works with the person within their own circumstances.

 

This definition, as is the care to be provided, is generalized, universal, inclusive but not explicit. It does not lead the General Practitioner into areas that require greater clarity and explication but relies on the General Practitioner being observant and focused on the task before him at the time to ravel the issues and implications for the individual who is presenting. It does not give suggestions or guidelines to focus the care.  Much of the specific work of General Practitioners requires significant emotional commitment from the General Practitioner, with the potential for the General Practitioner to become himself emotionally defended. 

 

When it comes to interviewing the General Practitioner about his attitude to end-of-life planning, for example, the answers are; he has not considered this process for the chronically ill patient; he recognises that it is an essential component of the primary task but has not considered taking up this responsibility nor does he feel enabled to perform this task because of time limitations or educational limitations on his part.

 

A General Practitioner states,

I suppose I should be doing this really, it is just another thing to add to everything else I should be doing.

 

How does the RACGP take up the ethical imperative of its leadership role, to enable the General Practitioner to focus on a primary task that is inclusive of whole person medical care? How does the General Practitioner take up his authority in this primary task, apply his theoretical knowledge, clinical expertise and be congruent in his relationship with the individual to provide this comprehensive care and end of life planning?

 

This working hypothesis attempts to explore a facet of the relatedness between General Practitioner behaviour and the way the primary task has been formulated by the RACGP.

 

Hypothesis:                         

Because there is no clarity surrounding specific implementation issues associated with the primary task defined by the Royal Australian College of General Practitioners, the General Practitioner takes an individual stance and may not view end-of-life planning as a component of their work – as part of the primary task.

 

This hypothesis was derived from the analysis of interviews with the General Practitioners and I will demonstrate its validity with excerpts from these interviews.  In using the phrase ‘lack of clarity’, I am referring to the necessity for further associated explanation and description to guide the General Practitioner in areas of care in which they may require support and endorsement, areas in which guidelines may assist their practice. The lack of clarity in the definition of primary task as stated in the hypothesis also leads the General Practitioner to take on an existential primary task, for his work reflects his own personal values as he experiences life. The assumptions he then makes for the care of his patient’s will reflect his priorities for patient care.

 

This General Practitioner simply takes up the definition of RACGP when asked,

We are primarily responsible for health care in the Community.

 

A more grandiose concept of the primary task of the General Practitioner!

A General Practitioner is someone who lets anyone walk in the door with whatever they have got and you treat whatever, I accept all people.

 

Or from the perspective of an existential primary task,

Assisting the individual on life’s journey.

 

There are also components of the primary task that are not taken up because they are hated or infiltrated and corrupted by defensive processes;  the tasks that create too much distress to fulfil them, like, end-of-life planning.

If I go to a home and have a discussion with a patient who is nauseated and vomiting, it is much easier to deal with the physical conditions, rather than have a conversation with someone who is dying as a result of a terminal illness, this is a different form of counselling that does not fit into things, I would find it hard to initiate this conversation and then charge for it.

 

As Joseph Sharp so profoundly states,

“Fears explode into consciousness.[6]

 

Another General Practitioner from another perspective says,

Primarily the issue is immediacy, dealing with the current medical or administrative problems; time is difficult, and the uncertainty and unknown limits the conversation.

[At this time our conversation is crowded out by noise, going on alongside; this makes me think of the personal noise, the fear, the anxiety when discussing dying and death, the ‘unknown known’, that will be going along inside.]

 

This quotation is stated in a context of the doctor–patient relationship were the General Practitioner considers that the important aspects that he brings to primary task in his relationship with his patient are;

knowledge, expertise, experience, confidence and reliability for their healthcare coordination and planning, someone to confide in or discuss issues with, generally give people some opportunity to talk about what is going on for them. I am prepared to be with them, sit and listen.

 

From the research data the General Practitioner identifies priorities in his expertise to fulfil his role, theoretical knowledge and clinical skills. In addition to these, the General Practitioner has the expectation of providing the space for a patient to discuss issues of importance. It may be that in providing this space the General Practitioner assumes that the patient will confide and talk about what is going on for them. However, this makes the General Practitioner a passive observer, listening not initiating, not purposefully taking up the task of end-of-life planning.

 

Currently end-of-life planning is left to the practice of the individual practitioner but there are numerous areas within medical practice that could have a detailed framework developed to elaborate a practical way of working. This applies particularly to areas that have not had significant change in their management orientation over time, or when the treatment options have been exhausted. It is in this situation that the maintenance of a quality of life is of relevance for the individual with a chronic illness, a terminal disease and the elderly.

 

These areas require the General Practitioner to encompass the psychological, inclusive of emotional and social aspects of health, as important to the continuing and complete care of the individual, and in so doing, to incorporate end-of-life planning to enable the individual to articulate their medical care wishes.

 

But, has the doctor the ability to be with the patient? In saying this, I am asking is he able to access within himself the feelings present as he listens to the individual, is he able to aid the patient to move to a place of exploration as a consequence of being with the patient. Does the General Practitioner feel he has the internal resources to be able to take up this component of the primary task?

 

An alternative would be, does the General Practitioner have a systematic process to guide the patient through end-of-life planning? Or, is the doctor aware of his own feelings and fears and therefore moves away from extending this conversation?

 

 

What about End of life Planning?

The emphasis is life not death we are trained to cure and death is failure.

“Death is something to be avoided”.

 

This General Practitioner states it very clearly,

We don’t really think about end of life planning in General Practice because you know as you are going along, you don’t really think about planning for everybody’s death because you are so busy dealing with the stuff to do with life.

 

The General Practitioners are afraid of entering an area that is unknown where they consider they do not have the ability. They would prefer the patient, the family or someone else to initiate this discussion.

 

This General Practitioner acknowledges the difficulties experienced with the considering of end-of –life planning.

I do not make the opportunity to end-of-life plan with patients, I am not confident, I have not been trained to explore an issue like this with patients it is different from delivering bad news, I am afraid of creating more anxiety in people by discussing morbid subjects, the patient may question whether I am trying to tell them something, or is their death inevitable, will I take away their hope.

 

Hypothesis:

The General Practitioner is unable to exercise the authority consistent with his role and avoids communicating with patients about significant life events including end of life planning because of its complexity and ability to provoke a considerable level of anxiety which he feels unable to contain.

 

These following representative comments from interviews with General Practitioners, demonstrate the major difficulty they face in envisaging a conversation with a patient about end-of-life planning.

I have never initiated a discussion about end-of-life planning with a patient, I would want the patient to initiate this discussion, but patients do not want to think about dying or address death, they only want to be positive. 

 

Or from another interview;

The patient would need to have a reason like a chronic or terminal illness before I would have this conversation, something that would give me permission, allow me.

 

This General Practitioner recognises the need to provide a safe place to aid in the containment of the anxiety and emotional distress. The acknowledgement of the special nature of the doctor-patient relationship assists in the development of this safe place.

The importance of relationship to me means the provision of a safe place to explore inner feelings, listening leading to personal understanding, the ability to trust and grow to know someone over time, to have a perspective knowing their context, what is going on in their life and that of their family and to be able to support both.

 

But because there is no perception of personal safety for the General Practitioner, in this conversation and the view that they will cause distress for the individual patient and will not be able to contain the distress, it is much safer not to initiate the discussion.

 

Menzies-Lyth while working in the hospital environment states,

“Staff still find illness and death, anxiety and distress terribly difficult to listen to and talk about with patients and relations.”[7]

 

This General Practitioner communicates the fear and anxiety experienced in considering a conversation about dying and death, how limiting and at times paralysing this fear is; fear of the unknown. In the setting of significant emotional pain the doctor does not feel capable of initiating a conversation to elicit the needs of the individual.

I was scared and afraid about having a conversation about sickness and death. The fear about intruding into a personal area and not knowing what to expect having never been there before, I was afraid of intruding. I had not been involved in discussions about dying or death. I had not thought about how to have a conversation about dying or death, let alone having a conversation about end of life planning. I have never had a conversation about end of life planning.

 

Krantz in writing about containment acknowledges the internal resources required by the practitioner, the ability to provide a space to allow anxiety, pain and confusion to exist without becoming overwhelmed by their intensity.

“The key element in enabling people to operate from the depressive condition is containment – in the sense that contexts must exist which can sustain the presence of potentially crippling anxieties, intense psychic pain, and disorientating confusion without themselves either confirming these experiences or collapsing in the face of them.”[8]

 

This General Practitioner recognises an alternative method to attain a similar end point. He speaks of a systematic process to bridge the chasm between thinking, feeling, and doing.

Even receiving this information before having this talk together I recognize how fundamental this work is, that I do not do this work, and that I do not have a systematic process to do this work, if end of life planning has occurred at least the options have been explored. When it is unplanned everything is a crisis.

Other General Practitioners align with this mode of thinking of developing a system in association with a chronic or terminal illness and as a format prior to initiating a discussion with the patient. This would give the doctor a strategy, permission, to initiate the conversation. In so doing it would depersonalise the setting and create a process, provide a different space.

The patient would need to have a reason like a chronic or terminal illness before I would have this conversation, something that would give me permission, allow me. Respecting them and their needs would make this conversation a little easier, empathy is important in this situation and therefore if there is no relationship it would be more difficult.”

 

An alternative is to put the responsibility on the patient or their family!

I have never considered initiating this discussion about end-of-life planning myself, but perhaps it could be the patient or the family, perhaps I could incorporate it into the discussion with the check up of a chronic illness, I could have a pamphlet in the waiting room and ask the patient to collect it on the way out to have a conversation next time.

 

How much does the practitioner put himself in the way of knowing?

I do not know what Enduring Power of Attorney (medical) EPOA is; I have had no association with this concept.

 

But there are General Practitioners who do see it as part of their role who do take up the responsibility of end of life planning as a process.

I explore their wishes by asking them a direct question and they give an answer.  I do not know what they are thinking or feeling, I do not ask, I do not know their religion, I do not ask,  I do not know what society thinks but there do not appear to be any specific cultural or religious issues, I fulfil the process, I ask the questions. The way families are now days they are reasonably isolated and therefore have very little contact with death, or the elderly dying, it is their first time.

 

The majority of General Practitioners spoke freely about the significance of the Doctor-Patient relationship and its relevance to creating a freedom in communication, but not in the realms of end of life planning.

The importance of relationship to me means the provision of a safe place to explore inner feelings, listening leading to personal understanding, the ability to trust and grow to know someone over time, to have a perspective knowing their context, what is going on in their life and that of their family and to be able to support both.

 

I have already used this quotation from one of the General Practitioner’s who is able to take up end of life planning as a component of primary task, he says,

To have this conversation is just part of being a GP; it is part of treating the person, part of the continuity of care.

 

 

EDUCATION

The General Practitioner states that there has been no specialized education or learning to achieve a way of being with his patient to fulfil the requirements of end-of-life planning.

 

Does the training for the medical student cater for the communication skills required to address issues of theoretical complexity or technical intricacy? How does the medical student gain the competency to discuss matters of personal privacy, psychological or emotional intensity and subjects of existential significance?

 

This General Practitioner says,

Medical School did not provide the environment for learning to discuss issues of significance, doctors were mass-produced, there was no acknowledgement of difference in the individual student, let alone the diversity in patients.

 

The General Practitioners state that post-graduate personal experiential learning is of significance. There is inadequate theoretical and didactic education and from analysis of the interviews there have been limited endeavours to achieve a dynamic experiential model for learning in under-graduate or post-graduate medical education.

Individual contact with dying or death within the family is an important personal educational experience.

 

Gordon in writing about medical education reflects on the current status;

“It is natural that medicine will attract students who are interested in the biomedical sciences…Unless they have adequate time for reflection, such students may ultimately adopt a dogmatic of overly technical approach to clinical practice, where every question has one correct answer. They may fail to reflect on broader questions about the healthcare system or their place in it. Recent research into the psychological wellbeing of recent medical graduates found that rates of emotional exhaustion and depersonalisation rose significantly during the intern year.”[9]

 

Hypothesis:

Personal experience with terminal illness, dying or death of a significant family member or close friend or a specialized, structured education involving the theoretical concepts (to develop a process) to communicate about end of life planning is necessary before a General Practitioner will take up the role to end of life plan with a patient.

 

There is the potential to learn from experience within the extended family but our cultural patterns have changed significantly, ease of travel has altered patterns of emigration as well as the nuclear family means there is limited exposure to the process of becoming old and infirm for the individual. Death has become an unusual event and therefore un-natural event, when it occurs it is the first contact with death for the members of the family and therefore something new to be comprehended. 

 

This General Practitioner comments on her own personal learning,

I have had no personal contact with the death of a close relative or friend. All of my relatives are (overseas); there is no immediate family in Australia.

 

The only way to deal with issues of significance in the professional capacity is to remove one’s self personally from the anxiety provoking components of the conversation to depersonalise the setting and become theoretical and technical in the communication.

 

But does this lack of training impact on the graduate commencing his medical practice? Or, what support is there within the tertiary establishment to facilitate learning while working?

 

As stated by this General Practitioner,

we are sausages pre-designed; communication has a problem-orientated focus that is solution driven there is no emphasis on the importance of the relationship.

 

Gordon has researched the medical education system in Australia and this statement is relevant;

“Recent research into the psychological wellbeing of recent medical graduates found that rates of emotional exhaustion and depersonalisation rose significantly during the intern year.”[10]

 

This echoes the comments of this General Practitioner reflecting on his training as an under-graduate and then as an intern commencing at a tertiary hospital.

There was no training in my undergraduate education about communicating issues of significance, I started my medical career as a child and blundered along making some terrible mistakes on the way in talking with people. There was no learning in the hospital environment either, I would be told to go of and tell a patient and their family a diagnosis without any guidance or mentoring about how to give such significant information. I remember being the designated person to speak with a patient and family in a neurosurgical rotation; I recall feeling distant and removed from them in my communication. At other times I recognised when I had blundered because people recoiled from the conversation or changed the subject.

 

This General Practitioner will agree with the comment above, he states;

There is no education as an undergraduate to communicate about issues of significance this comes with personal practice. The GP training programme was most influential to my learning, we did role plays in small groups around difficult patients, and difficult situations, these were facilitated by trainers and we were asked to explore our feelings about the context and how we felt about the part we played.

 

Another outcome of the style of education within the bio-science of medicine is of cure rather than care with the myth of omniscience with omnipotence. This leaves the medical practitioner in a paranoid-schizoid position, either of grandiosity with personal prowess or vulnerability in failure associated with personal responsibility and guilt.

 

Hellman reflects on a doctor-patient relationship with a terminally-ill patient; Medical education does not prepare doctors to deal with death and dying. The emphasis of modern medicine is on cure. Accepting that death is inevitable for a particular patient usually invokes a sense of failure.”[11]

 

Even within the realm of the doctor-patient relationship, the General Practitioner is not equipped to take up the authority of his primary task to provide comprehensive whole person medical care inclusive of end of life planning. Menzies-Lyth wrote about this as it related to the nursing practice, the same applies in the medical environment.

 

The General Practitioner uses the social defence mechanisms[12] available to us all in Society, denial of death; he is able to cure, avoidance of facing death until there is no alternative; death is on his door step.

Education is a limiting factor; I have not been exposed to or learnt about how to end of life plan, or end of life planning is not a defined component of the primary task.

 

These defences are constructed to eliminate the situation that would precipitate the anxiety, doubt or uncertainty; silence the thought, obliterate the task, don’t initiate the conversation and control the relationship.

 

 

SO

how does the

 

 

GENERAL PRACTITIONER

 

face

DEATH

 

 

the

 

??   “UNKNOWN    KNOWN[13]   ??

 

 

 

Anton Obholzer defines

the “UNKNOWN KNOWN”

 

 

 

“By this I mean individuals facing tasks on or over the time/conceptual horizon; tasks that can somehow be envisaged but not emotionally grasped; tasks that can be thought about and yet not adequately conceived. It is as if what is required is beyond the make-up of the individual, and in order to master the task, psychic elements have to be summoned that cause discomfort and emotional turbulence.

 

 

 

 

 

The natural inclination is to reduce the “length” of one’s vision – keeping one’s head down as regards the future, and perhaps carrying on as if nothing had happened or was about to happen… It does require a particular inner-world balance of omnipotence and sanity to say  -- ”

 

 

 

 

“The best way to control the future

is to invent it”

 

can WE as individuals

face our own

DEATH?

 

 

 

in a NEW way

 

 

MAKE OUR CHOICES   

  KNOWN?

 

 

 

we all know the importance

 

of being there

when the person needs the help.”[14]

 


 

 

 



[1] Miller, E. J. & Rice, A. K. (1975) ‘Selections from: “Systems of Organization”’, in (eds) Coleman, A.D.    & Harold Bexton, W. Group Relations Reader 1, pge65. USA: A.K.Rice Institute.

[2] Gordon, R. (1978) Dying and Creating: A Search for Meaning, pge8, LONDON: Karnac.

[3] Sharp, J. (1997) Living our Dying, pge115. LONDON: Rider, Random House.)

[4] RACGP Memorandum & Articles of Association, adopted at 2004 AGM.

[5] RACGP (2004) Definition of General Practice in Australia.

[6] Sharp, J. (1997) Living our Dying, pge42. LONDON: Rider, Random House.

[7] Menzies Lyth, I. (1988) Containing anxiety in institutions, pge27, LONDON: Free Association Books.

[8] Krantz, J.(1996) ‘Anxiety and the New Order’ in  pge88

[9] Gordon, J. Medical humanities: to cure sometimes, to relieve often, to comfort always. MJA 2005;      182: 5-8.

[10] Gordon, J. Medical humanities: to cure sometimes, to relieve often, to comfort always. MJA 2005;     182: 5-8.

[11] Hellman, A. Narrative and illness: the death of a doctor’s friend. MJA 2005; 182: 9-11.

[12] Menzies Lyth, I. (1988) Containing anxiety in institutions, pge63, LONDON: Free Association Books.

[13] Obholzer, A. (2001) ‘The Leader, the Unconscious, and the Management of the Organisation’ in (eds)    Gould, L. Stapley, L. & Stein, M. The Systems Psychodynamics of Organizations, pge213-214.             LONDON: Karnac.

[14] Menzies Lyth, I. (1988) Containing anxiety in institutions, pge32, LONDON: Free Association Books.