Those who are dying have complex needs
11 MINUTE READ
From Luke’s Journal 2021 | Dying & Palliative Care | Vol.26 No.2
Those who are dying may require considerations of physical (especially pain and other symptoms), psychological, social, cultural and spiritual factors.
The vulnerability and the power differential between the clinician and the patient also need to be considered. Initial information obtained from the patient is better done through a narrative process where the patient leads the conversation rather than a systematic interrogation where the doctor leads.
In our community, relatively few patients these days would identify as Christian. Therefore, direct discussion of how Christianity may be of benefit to them may not be relevant. Where the patient expresses a faith during discussion, the Christian clinician may want to directly discuss the matter or ask for a chaplain or religious person of their persuasion to be available if the patient has specifically religious questions.
It is important that matters of faith or spirituality are brought up in the initial conversation, if possible, as this will indicate to the patient that these are important in their management. If the clinician works as part of the team, it is important that multiple members don’t ask the same questions of the patient as it seems that patients do not want to repeatedly answer the same questions. One patient in our unit said, “Do I have to provide this information repeatedly, don’t you people talk to each other?”
Some clinicians feel that discussions of faith or spirituality should be kept as a private matter and nothing should be written in the patient records about spiritual symptoms. If the patient feels that it should be kept private then that should be done, but otherwise it is important that each clinician is aware about the patients concerns relating to faith and spirituality in the same way they would be made aware of physical symptoms.
Religion is a system of beliefs and practises associated with an individual or community which transcends physical life and may relate to a deity. Christian faith is defined in Hebrews 11:1, “Now faith is the confidence in what we hope for and assurance about what we do not see”. For people of Christian faith, answers can be provided to many significant spiritual stressors about life.
It is not uncommon to hear people say these days, “I am spiritual, but not religious”. Let us explore the two terms to try to unravel what they mean in a clinical context, remembering that it is impossible to define spirituality in general.
|Some Spiritual Stressors*||Some Biblical answers*|
|Loss of Dignity||Made in the image of God (Gen 1:27)|
|Fear||No fear (Psalm 23:4)|
|Hopelessness||Hope (Rom 15:13)|
|Being Unloved||Love of the Father (1 Jn 3:1)|
|No Peace||My peace I give to you (Jn 14:27)|
|Anxiety relating to death||Death defeated (1 Cor 15)|
|Unforgiveness||Forgive one another (Col 3:13; 1 John 1:9)|
|Is there life after death?||Eternal life (John 10:28; John 14:1,2)|
*These are just some examples, there are many others.
The National Church Life Survey quotes, “The term ‘spirituality’ is French Catholic in origin and did not fully develop as a concept until the 18th Century. Giving an exact definition for the term becomes difficult. Used by the Church at many stages and in varying ways to attempt to define, explain, and outline the entire relationship between a person and God, a precise definition becomes impossible. Contemporary usage in wider society complicates a definition further with the concept leaving its Christian roots behind and coming to mean any aspect of humanity’s connection to something other than itself. This includes deism (natural revelation), and theism (revealed revelation), yet also expands to include even other human relationships. Spirituality in its broadest sense is the evidence of, or attempt to explain, human transcendence.”1
“Once synonymous, ‘religious’ and ‘spiritual’ have now come to describe seemingly distinct (but sometimes overlapping) domains of human activity.”
The twin cultural trends of deinstitutionalisation and individualism have, for many, moved spiritual practice away from the public rituals of institutional Christianity to the private experience of God within. Once synonymous, ‘religious’ and ‘spiritual’ have now come to describe seemingly distinct (but sometimes overlapping) domains of human activity.
Roxanne Stone, editor-in-chief at Barna Group, a Christian survey group from California, commenting on spirituality in their sample of American people, divided those who described their spirituality into two groups. “The first is disenchanted with the church; the second is disenchanted with religion. The former still hold tightly to Christian belief, they just do not find value in the church as a component of that belief. The latter have primarily rejected religion and prefer instead to define their own boundaries for spirituality — often mixing beliefs and practices from a variety of religions and traditions”. A detailed analysis of these groups is well worth reading.2
Spirituality as part of illness symptomatology
Spiritual issues have been noted for centuries among patients suffering illness and has been commented on, for example, by Hippocrates. Cecily Saunders, the founder of the modern hospice movement, emphasised spiritual care as part of the holistic care that needs to be given to palliative care patients.3
Research aimed at relating spirituality symptoms to outcomes stimulated the search for definitions that could be applied to these studies. For example, Christina Puchalski, MD, Director of the George Washington Institute for Spirituality and Health, contends that, “spirituality is the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.”4 Spirituality is deemed applicable to all people, but is especially evident in those facing a crisis such as a terminal illness.
There has been consensus building in applying a definition to spirituality in palliative care. In 2013, the International Consensus Conference defined spirituality as,
“the dynamic and intrinsic aspect of humanity through which persons seek ultimate meaning, purpose and transcendence and experience relationship to self, family, others, community, society, nature and the significant or sacred. Spirituality is expressed through beliefs, values, traditions, and practices.”5
People who have a terminal illness tend to review their lives looking for episodes that have made them thankful or regretful. Since dying includes a series of losses, people often become distressed by regretful memories. Surveys in the United States of palliative care patients have shown that most people wish to discuss their spiritual symptoms with their clinician, but other studies show that less than 50% of doctors believe it is their role to address such concerns.6,7 The result is that many people who are dying are denied from discussing their spiritual distress with their clinicians.
“People who have a terminal illness tend to review their lives looking for episodes that have made them thankful or regretful.”
Some of the ways patients express their spiritual distress when they are facing a terminal illness may include a desire for peace, anger or resentment, guilt, sadness or grief, lack of meaning in their life, loss of hope or purpose, feeling life or God has treated them unfairly, fear of death, lack of dignity, loss of role in family or community, or both, unresolved religious concerns or spiritual questions, doubt, helplessness, loss of self-worth, loss of control, failure of reconciliation, loss of connection with people or place and many more. These items of distress may be expressed directly or indirectly. Sometimes, skill is required to untangle symptoms that are attributed directly to common items such as the standard of food or medical attention that are really proxies for spiritual distress due to deeper causes.
Many practitioners do not remember or have not been taught how to include spirituality questions in the discussion of the patient’s illness. There are several ways to begin if patients do not mention them in initial narratives. One is the HOPE questionnaire.8 “H” covers sources of hope, meaning, strength, peace, and love. “O” covers inquiry about organised religion. “P” explores personal spirituality and practices. “E” explores the effects of care and end of life decisions. Other ways of including spirituality discussions are listed by Balboni et al.9
Caring for the patient
Spiritual symptoms do not remain static, but often vary with the patient’s clinical status. Discussion is best introduced at the first meeting, but follow-up assessments will be required.
“Patients need to know that clinicians are interested in their spiritual lives and the distress that may arise at times of crisis.”
The nurse or pastoral care practitioner often participates, but the patient often expects the doctor to be involved as that person is involved in managing other symptoms. Patients need to know that clinicians are interested in their spiritual lives and the distress that may arise at times of crisis.
I remember well a patient who had severe abdominal pain. She complained about it as her sole symptom which we were able to completely relieve. After a couple of days, she stated that she had other worries regarding her family and her remaining life. The physical pain had masked the spiritual pain. She said she would rather have the pain back than to contend with the disturbing spiritual issues that had arisen.
How can spirituality and the Gospel be best presented to the palliative care patient?
For the clinician, coping with spiritual distress can be difficult and distressing. There is no “magic bullet” or wonder drug for this condition. It involves clinicians not “distancing” themselves from the patient, but skilfully and empathetically listening to the distress and allowing the patient to work through it themselves. Holistic care should be the aim of care for all palliative care patients whether they are managed in general practice, specialist practice, in hospitals or nursing homes. Studies have also shown excellent results in other units, such as intensive care units who focus on spiritual symptoms.10
Christian health care professionals who wish to share their Christian faith might well consider beginning with a spirituality assessment. Exploring spirituality with the patient has proven benefits for patients who are facing a health crisis and allows Christian health care professionals to discuss their Christian beliefs if the patient is interested in Christian answers to these major spiritual issues. Beginning with a spiritual assessment also allows the Christian health care professional to provide spiritual care to all patients, religious or not, which should be the goal of palliative care in all modes of medical care.
Prof Peter Ravenscroft Prof Peter Ravenscroft is a retired palliative care physician. He was Professor/Director of Palliative Care at Calvary Mater Newcastle. He has a long association with CMDFA as President of Queensland Branch, of CMDFA Australia and Chairman of ICMDA.
- National Church Life Survey quoted in http://www.ncls.org.au/default.aspx?sitemapid=26.
- Roxanne Stone quoted in https://www.barna.com/research/meet-spiritual-not-religious/
- Saunders C. Spiritual Pain. J. Palliat Care 1988;4:29-32
- Pulchalski CM et al. J Palliat Med 2014; 17:642-656.
- Pulchalski CM et al. J Palliat Med 2014; 17:642-656.
- El Nawawi MN et al. Curr Opin Support Palliat Care 2012;6:269-274
- Rodin D et al. Support Care Cancer 2015;23:2543-2550
- Anandarajah, G., & Hight, E. (2001). Spirituality and medical practice: using the HOPE questions as a practical tool for spiritual assessment. American family physician, 63(1), 81.
- Balboni TA et al. J Pain and Symptom Management 2017:54;441-453
- Swinton M et al. Amer J Resp and Critical Medicine 2017;195:198-204.