Kota Kinabalu: Spiritual support to a dying person regardless of whether he or she believes in a higher power or God is crucial in ensuring a passing on without spiritual pain or distress. When one talks about religion, one would not usually separate religion from spirituality but neither should one assume that people who deny any religious affiliation have no spiritual needs.
This was stressed by KK Palliative Association President, Dr Suzain Datuk Suhaimi in her sharing at the National Conference on Quality of Life (QoL) and Quality of Death (QoD) organised by Universiti Malaysia Sabah (UMS) recently.
Spiritual pain, she said is reflected as a sense of hopelessness, focused on suffering rather than pain, feeling of guilt and/or shame, unresolved anger, inability to trust, lack of inner peace and sense of di-connectedness or fragmentation.
The pathway leading to the terminal or dying phase of a person's life is long and a difficult one. Hence, the last phase of life may not be a suitable one to be asking detailed questions about one's spiritual conflict or holding deep philosophical conversations.
"Some patients are capable and do wish to explore such issues but more often that not, we find that their ability to sustain such conversation even when desired is very much limited and it has more the feel of 'cramming for finals'.
"It is important that the questions be broached with tact so that the patient will be confident that the people around will listen and not leave them feeling 'silly' or morbidly negative."
Stretching on the significance of a quality 'transition', Dr Suzain said it was essential for health care staff to have developed a reasonable understanding of where the patient is, psychologically, emotionally and spiritually in terms of their death before the patient enters the terminal phase of his or her life.
This would include information relating to:
* Nature of spiritual/pastoral support they need.
* Wishes for any specific religious support or ritual prior to and after their death.
"Regular assessments must be made over time keeping with good palliative practice.
"A patient's response differs according to different situations and is closely related to their experiences in life. Some may be very clear and articulate while others may be confused, anxious and panicky as they realise their life is coming to an end.
"Often we meet patients only towards the end of life and there may be very little opportunity to address their spiritual needs. Therefore we must plan appropriate responses to their wishes. It may entail support or help in overcoming their anxieties or a more formal religious response of prayer, offering reassurances or enabling the individual to express sorrow or sadness for past hurts or misdemeanors.
"It could also mean sitting quietly beside the patient as they leave this world and if the carer and family has a spiritual belief, praying for the dying person and family within one's own heart and mind is also encouraged."
According to Dr Suzain, family conferences play an important role in establishing and planning the form of spiritual care required by the patient and the response can be used as a means to plan the approach which may be unique to each particular case.
"The final days of the patient's life is usually a tensed one, full of apprehension and anxiety especially within family members. And these anxieties can often lead to controversial requests.
"It is widely received that the final moments be handled with calm, peace and tranquility to allow the passage of soul from the body and surrounded only by prayers for the dying. But people who do not profess any form of religious faith may still wish to have the opportunity to be quiet, to reflect, to commune with whatever forces or powers they feel are beneficial to them."
"The final hours are usually left for the family to be with the patient and minimal medical intervention is usually required.
"As palliative care volunteers, we play an important role in reassuring the family and guiding them through the normal psychological changes that take place toward the impending death and advise them on the need of spiritual preparation towards the final hours. Acts of reconciliation and forgiveness is usually encouraged a few days prior to the death.
"It is important to inform family members when the time is near and the psychological changes that occur over time to prevent panic and unwanted actions. Discussion between the family members on the patient's wishes and apprehensions usually paves the way for more 'peace and calm' during the final days and moments. Usually strong efforts are made to cater for the religious needs of the patient as the time draws nearer."
Dr Suzain said it was fortunate that in Sabah, most of the patients' spiritual needs could be fulfilled through their respective faiths, religion and cultures. "However in a situation whereby there are people of multiple faiths and traditions within a family, it is important for us to understand and hold respect for each one's views and practices and not be influential and judgmental about it.
"Through mediating family discussions we can guide the family to obtain the appropriate help from the religious fraternity of their faith to resolve the issues."
In this context, palliative care volunteers have to equip themselves with an understanding on the issues of death and dying amongst the different faiths and cultures, she said.
Spiritual care is widely recognised to be an integral part of specialist palliative care provided by a multidisciplinary team. The integration of various holistic approaches, includes both the psychological and spiritual issues surrounding the patient.
Spirituality is often thought to be synonymous with religion and are often lumped together but although it is closely related it need not necessarily be so. "It has more to do with our desire to make sense of our world and find our place in it. Just as we are different culturally, religiously and just by virtue of who we are - all those who are dying are not the same.
"As a definition, spirituality is described as a search for existential meaning within a life experience, usually with reference to a power other than self, not necessarily called 'God', which enables transcendence and hope.
"In a way it refers to ways people in times of crises or other formative moments in their life become aware of a desire to understand or make sense of what they are experiencing.
"The existential dimension is often expressed as:
* Who am I?
* Does life have any meaning after this?
* Has this illness the power to destroy me?
"For those with religious faith, they often seek solace in attempts to grow closer with their creator and appreciate a more spiritually religious atmosphere. Recitations of verses from the Holy books and visits from religious officials often bring about peace and tranquility for the patients.
"It is significant that many of the complimentary forms of therapy have a clear focus on the individual person and on trying to assist that individual in their search for what many describe as 'inner peace' and therefore related to spiritual need and development. Thus aromatherapy, head or foot massage, visualisation or art therapy may all enable the person to explore and express aspects of themselves and their experience of illness and treatment in the hope of transcending some of the more difficult aspects."
