Spiritual pain at end-of-life in a changing world

Rodger Charlton

HK Pract 2014;36:107-112

Summary

Patient care traditionally addresses the physical, psychological and social aspects of holistic care, but neglects that there may also be 'spiritual' needs.

摘要

傳統上的全人護理，注重解决病人身體，心理和社會各 方面問題，但可能忽略了病人'精神'方面的需要。

Introduction

This paper summarises a presentation, given at the 20th Hong Kong International Cancer Congress (HKICC) 14^th November 2013, as part of the Family Medicine Symposium.¹ The objectives of the address were to consider the concept of a spirit, spiritual health and spiritual pain with a particular emphasis on spirituality in end of life (EOL) care as a possible overlooked component of primary care and palliative care.

Defining "spiritual"

Medical teaching focuses an increasing emphasis on holistic care, and so, on the whole person. In this context, when asking what is meant by the spirit, everyone has a different viewpoint. Is it important to ascertain if there is a reliable definition? If so, questions one might ask are; is it physical, mental, is it in the mind and what is the nature of the spirit or soul? In fact, there are more questions than answers. It is not a new concept and it does not necessarily refer to a religious faith although the two may overlap. The late Dame Cicely Saunders, who is attributed as the founder of the modern hospice movement, coined the phrase "total pain" in the 1960s which she referred to as the physical, psychological, mental, emotional, social, as well as the spiritual aspects.²

Spiritual is included in the European Association of Palliative Care (EAPC) definition of palliative care as follows;

"Palliative care is the active, total care of the patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of social, psychological and spiritual problems is paramount."³

Similarly, spiritual needs appear in the World Health Organisation definition.

Twenty years ago, I sought the views of New Zealand medical students on this subject and in the free text of the survey one student made the poignant point: "I think that there are more important things to learn in our overfull course than putting more into it about this kind of thing. Please do not recommend more extraneous stuff to be put in our course or more messy and pointless 'ethical & philosophical' kind of time consuming garbage".

Maybe the student had a point and one should respect all views and reflections regarding such an opinion.⁴ One can try to illustrate spirituality in a Venn Diagram as follows:

Recurrent themes reflecting on "spirituality"

During teaching and presentations on this topic, groups of trainees and practitioners provide recurrent themes. For example, when asked to reflect on the characteristics of the spirit in a health context, these include:

● Feeling of a meaning / purpose in life, perhaps something existential or internal.
● Acknowledging that there are a wide variety of views.
● Being aware that there are many religious faiths of varying commitments.
● Remembering that everyone's reality is different and everyone's truth is different.
● Respecting that interpretations are different and so perspectives.

Similarly, when asked to consider the concept of spiritual health it might comprise recurrent themes like:

● Strength of will (Those fighting cancer may do better).
● Extent of optimism (Hope).
● Happiness (GPs - see many who are sad).
● If it exists, what is it? (Difficult to define).
● When one is spiritually 'well' one is at peace.
● What makes it better? What makes it worse?
● Like all aspects of health it fluctuates.
● Does it vary according to physical health?
● Distinguishing between Spirituality and Religion.

Subjectivity and objectivity

It is challenging to provide objectivity, where possible, in what is an area of subjectivity. Therefore, in relation to the term spirituality, there are several possible definitions. For example, spirituality as a mechanism which allows a person to experience transcendent meaning in life or it could be as is often the case something which is frequently expressed as a relationship with God. Spirituality can also be about nature, art, music, family, or community and so whatever beliefs and values give a person a sense of meaning and purpose.⁵

A USA paper considered the factors important at the EOL by patients, family, physicians and other care providers.⁶ A random national survey was conducted in 1999 of seriously ill patients (n = 340), bereaved (n = 332), physicians (n = 361), and other carers (including nurses, social workers, chaplains, hospice volunteers; n = 429). The paper found 44 attributes of quality at EOL as important. The key findings of this paper were the following issues which were important to patients and others but not so important to physicians (p < 0.001):

1) Be mentally aware
2) Be at peace with God
3) Not be a burden to family
4) Being able to help others
5) Prayer
6) Have funeral arrangements planned
7) Not be a burden to society
8) Feel one's life is complete

Doctors considered that the following would be of the upmost importance:

● Pain control
● Symptom control
● Depression
● Cure

However, overall "Freedom from pain" and "Being at peace with God" were ranked as most important (and were statistically equivalent) by patients and doctors.

Death as a taboo subject

Death may almost be viewed as a taboo subject where a taboo is literally a social prohibition or ban. In the 1960s, Elizabeth Kubler Ross, a Swiss born psychiatrist working in the United States was someone who also had a considerable influence on the modern hospice movement. She is perhaps best known for her proposed five stages of anticipatory grief of which the last stage is when the patient moves from depression to acceptance of their illness.⁷ As part of the taboo it could be argued that it is rare to experience a patient who is dying that reaches the stage of acceptance, but rather more appropriately they are resigned to their fate and so in a state of resignation, thus adding a sixth stage to the original proposal.

Then the part of palliative care which is defined, but receives minimal attention arises. This is because it is not seen as a "medical" issue and is the process of bereavement or grieving. For some time after death it may appear more that the loved one or friend "has left" rather than died. A continued concept of taboo in this area is avoidance of the term "death" which is fundamentally scary where a loved one has in fact died.

A further part of the taboo is the limited possibility of patients dying at home which is rare in Hong Kong and far from common in the UK where perhaps only 25% of terminally patients die at home. Patients have an anxiety whether or not they can look after themselves at home and for many reasons primary care is not set up or prepared for EOL care at home. This leaves a further dilemma as to whether some of the suffering that patients go through if they are dying is the anxiety about where they will die. As a part of this relatively taboo subject they feel not able to talk about this.

The EAPC have provided a working definition of spirituality in 2010 and it is as follows:

"Spirituality is the dynamic dimension of human life that relates to the way persons, individual and community experience, express and/or seek meaning, purpose and transcendence, and the way they connect to the moment, to self, to others, to nature, to the significant and/or the sacred."⁸

To understand the concept of spirituality and spiritual pain necessitates the understanding of people, something which family physicians are very good at. This, however, involves considering the following aspects when caring for patients and applying the concept of spirituality:

● Understanding oneself and developing an appreciation of seeing people from other backgrounds / faiths.
● Getting to know people in their context.
● Acknowledging that the values of medicine differ between doctors.
● Being aware that each human interaction changes future actions and so judgments.
● Being open to continuously redefining life.

The transition from "Being" to "Un-being"

To understand spirituality and spiritual pain it can be considered by reflecting on the author of the novel 'Ring of Bright Water' (Gavin Maxwell) which was set in rural Scotland. He is reported to have recalled the great pain of the solitary moment of moving from "being to un-being" when he was dying of cancer. Doctors are rarely present at the moment when patients die and tend not to have the conversation, "What will it be like when I die?", as it is unusual for patients to ask this question. However, it could be argued that reducing spiritual pain is facilitating a person to the transition from "being" to "un-being".⁹

As well as ameliorating physical pain and symptoms for a cancer patient it is facilitating this transition which may be wide ranging, for example, about personal conflicts with family members or friends and so enabling a person to re-order their priorities and let go. Getting involved in these conversations and circumstances is something that doctors tend not to do and so for both doctors and the public, who are future patients, death is a 'taboo subject'. This is accentuated for members of the public as:¹⁰

● It is rare for the majority of the public to see a dead body.
● Dying has been 'medicalised' in UK institutions where > 70% of people die; and > 90% die, in Hong Kong.
● Death has been transformed from being an accepted everyday occurrence and natural part of the life cycle, into a 'taboo subject'.
● Dying has been medicalised, professionalised and sanitised to such an extent that it is now alien to many people's daily lives (The lost art of Dying).

And yet this is contradicted by all that we know. As long ago as 1612, Sir Francis Bacon suggested that death is part of the natural life cycle:¹¹ "To die is as natural as to be born". Death is a 'rite of passage' in which we will all participate as family member, provider, or eventually, patient.

Spiritual distress

If one is looking for a definition of spiritual distress there are many and the one following is helpful:¹²

"Spiritual distress is defined as disruption in the life principle that pervades a person's entire being and that integrates and transcends one's biological and psychological nature."

When doctors see patients on a day-to-day basis, they may encounter some common verbal expressions of spiritual distress including:

● Unfairness - (Why me?)
● Unworthiness - (I don't want to be a burden.)
● Hopelessness - (What's the point?)
● Guilt & punishment - (My disease is a punishment, but I have led a good life.)
● Isolation and anger - (No one understands me.)
● Confusion - (Why is this happening to me?)
● Vulnerability - (I am afraid.)
● Abandonment - (My God, or my family, doesn't care about me.)

Spiritual health assessment

These are particularly important to consider when a patient appears to have pain or symptoms that cannot be controlled pharmacologically. In order to understand this, some authors have suggested the possibility of conducting a spiritual assessment. To make a diagnosis of suffering, and so spiritual pain, one should be looking for it and asking questions as one USA author suggests, like:¹³

● "Are you suffering?"
● "When life has been difficult for you, what has enabled you to cope?"
● "Do you have a way of making sense of the things that happen to you in life? Do you have particular beliefs that help you to make sense of life?"
● "What is really important to you at the moment? Would you like to talk further to someone about these issues?"

There are several tools that exist for clinicians when considering discussing spirituality within a clinical context and these include:

● The Mount Vernon Cancer Network spiritual care assessment tool.
● FICA (Faith/Beliefs, Importance, Community, Address in care or action).
● HOPE (Hope, Organised religion, Personal spirituality, Effects on care and decisions).
● SPIRIT (Spiritual belief system, Personal spirituality, Integration, Rituals/restrictions, Implications, and Terminal events).

Practically, and on an everyday basis for a clinician, there are many potential interventions that are available such as conducting an assessment, the most important part of which is listening and talking. But also, if appropriate, counselling, psychotherapy and the involvement of a religious chaplain if it is a faith issue.

Many years ago, I recall a patient who had uncontrollable symptoms who was dying of cancer and had a notice on the door to his room stating that certain people were asked not to enter (various family members and others). This was a good example of somebody with total pain which on reflection was spiritual due to unresolved conflicts. This underlines the message that opiates can only achieve so much.

Conspiracy of silence

Elizabeth Kubler Ross was also remembered for coining the phrase 'conspiracy of silence'¹⁴ when thinking of a patient with a terminal illness where nobody is talking to each other or the patient, but everybody is talking about their terminal illness. So often is the case that a patient has a very good idea what is happening to them when they are dying, but no one is talking to them about it directly. Furthermore, the influence of the family is strong and who can sometimes request doctors not to disclose details of the terminal illness to the patient. Relatives may be well intentioned by not wanting their loved one to suffer through such information. However, the spiritual pain the patient will experience is the fact that information is being kept from them to which they are entitled and so they perhaps cannot make the preparations they would wish and address any unresolved conflicts. Ideally, patients should always be assured of their autonomy and confidentiality. A review of one of Kubler-Ross's books states:¹⁵

"[Kubler-Ross's] work has vanquished the conspiracy of silence that once shrouded the hospital's terminal wards….. In so doing, it has shown how, and with what quiet grace, the human spirit composes itself for extinction."

Bevins and Cole describe how technology and modern medicine at the EOL may be at odds with the concept of Spirituality:¹⁶

"Death is the edge of a mystery, and turning our faces toward the problematic, through the persistent use of technology, at the hour of death keeps us from having to face this mystery. Death is no problem to be solved; it resists any such formulation...by keeping our attention on end-of-life problems, we ignore the mystery of the end of life."

Why dying is so difficult

Freud in 1915 reflects and tells us why this whole subject is so difficult:¹⁷

"Our own death is indeed unimaginable and whenever we make the attempt to imagine it we can perceive that we really survive as spectators ... at bottom no one believes in his own death, or to put the same thing in another way, in the unconscious every one of us is convinced of his own immortality."

A final reflection on taboo in death and dying:

● Is it death we are frightened of or not being here and a part of everything?
● Is it theanxiety and fearthrough the anticipation of dying?

Until there is illness and so suffering, spiritual pain is unlikely. Spiritually, one is 'healthy'. And so everything changes when we are ill and so things are no longer going well:

● Is this how it is for our patients?
● Is this spiritual anxiety / pain?

Conclusion

Defining spirituality and spiritual pain is difficult and what part it plays in suffering. When trying to help patients who are dying or suffering with severe illnesses it is important to remember that everyone's reality is different, everyone's truth is different and the perspective of doctors is not necessarily the same as that of their patients. It may help in the assessment of such patients to take a spiritual history, which in years to come may become a routine part of the care of a person with an advanced illness. Ideally, spiritual distress should not be medicalised and it should be viewed in the context of 'total pain'. When all else fails, the best we can do is to listen and be truly present with our patients on their journey and what also will be our journey.

Acknowledgements

Professional conversation with Mr KL Cheung (Hong Kong graduate), Consultant Surgeon, Derby Royal Hospital, School of medicine, University of Nottingham.

Dr Melvin Xavier, GP & Training Programme Director, West Midlands for his input through the following conference oral paper presentation; Charlton, R., Wilkinson, M., Prince, R., Xavier, M. "Spiritual health - an overlooked component of primary care and palliative care" (ID 899) for WONCA 2013 World Conference. Prague. 27.06.13.