Spiritual Care in Palliative Care Team
Chien-An Yao, M.D., MPH
Director of Palliative Care Unit, Department of Family Medicine
National Taiwan University Hospital
Prepared for the 24th General Conference of the World Fellowship of Buddhists
Symposium on Buddhist Wisdom in Caring for the Dying and Bereaved
November 17, 2009
Facing death prompts human beings to consider spiritual or existential issues. Throughout the ages, people have sought a "good death" in which they are physically as comfortable as possible, are treated with compassion and respect, and find closure in their lives. Many people fear that they will have unrelieved symptoms, will undergo unwanted life-prolonging interventions, or will be abandoned by their health care providers. Recent research documents serious problems in medical care at the end of life. Many patients experience significant sufferings in their final days. Communication often is poor, many seriously ill patients and medical staff do not discuss care at the end of life. When conversations do occur, medical stall miss opportunities to address patients' concerns and fears. Control of symptoms, relief of distress, improving quality of life, and attending to the psychosocial aspects of illness are appropriate in all stages of disease, including early on, when interventions are directed against the underlying illness. Discussions can be put into the context of exploring patient and family concerns about the future, helping the patient be in control of care, and setting up shared goals for care.
Palliative care is commonly considered terminal care, there is traditional a sharp transition from disease-oriented therapy to palliative care. The average patient enters our palliative care unit about 2 weeks before death, and 38% enter only 1 week before death. Serious problems result when palliative care is considered only after disease-oriented care fails or becomes too burdensome or when the patient reaches a clearly defined terminal phase. Opportunities to relieve symptoms and achieve meaningful closure to life may be missed. The negative perception that palliative care means that all else has failed is reinforced. Patients may aware incorrectly that relieving symptoms is important only near the end of life. Furthermore, it is difficult to identify patients who are expected to die in the very near future, particularly in diseases other than cancer. Thus, discussing palliative care only with patients who are highly likely to die soon will miss many patients who may benefit from it. As disease progresses, many patients may decide to forgo some disease-oriented therapies, and relief of symptoms and attention to psychosocio-spiritual needs may require increased attention. Hospice care and palliative medicine work to achieve the goals of comfort care. The medical proverb is pertinent: Cure sometimes, support frequently, comfort always. Medical teamwork needs to improve their discussions with patients and families about end-of-life care. Because good end-of-life care can help dying patients achieve closure and find meaning in the final phase of their lives.
Dying is more than a biological occurrence. It is a human, social, and spiritual event. Dying nowadays is more horrible in many ways, namely, more lonely, mechanical, and dehumanized; at times it is even difficult to determine technically when the time of death has occurred. What happens in a changing field of medicine, where we have to ask ourselves whether medicine is to remain a humanitarian and respected profession or a new but depersonalized science in the service of prolonging life rather than diminishing human suffering? The challenge to the medical team is to recognize the spiritual dimension of patient care and to make resources available for those patients who wish them and in the form desired. While holistic palliative care includes the spiritual dimension of well-being, this aspect of care becomes a central issue of end-of-life care. Medical team working with dying persons need to be sensitive to such concerns in their patients and be open to assisting with their explorations. It must be emphasized that, when the goals of curing are exhausted, the goals of caring must be reinforced. Often the involvement of medical team in the last days of patients is absent. If the medical team accepts a fatal outcome, they will help the dying patient as well as his family to cope with the loss of a beloved one. A man is allowed to die in peace and dignity in his own familiar environment. The terminally ill patient has very special needs which can be fulfilled if we take the time to sit and listen and find out what they are. The most important communication, perhaps, is the fact that we let him know we are ready and willing to share some of his concerns. To work with the dying patient requires a certain maturity that only comes from experience. We have to take a good hard look at our own attitude toward death and dying before we can sit quietly and without anxiety next to a terminally ill patient. The therapist- physician, clinical chaplain, or whoever undertakes this role- will attempt to let the patient know in his words or actions that he is not going to run away if the word dying is mentioned.
Spirituality is concerned with the transcendental, inspirational, and existential way to live one's life as well as, in a fundamental and profound sense, with the person as a human being. The search for spirituality may be heightened as one confronts death. Those who provide care for dying persons must respect each person's spiritual beliefs and preferences and develop the resources necessary to meet the spiritual needs of patients, family members, and staff. These resources and associated support should be offered as necessary throughout the bereavement period. A spiritual orientation influences mental, emotional, and physical responses to dying and bereavement. Medical team working with dying and bereaved persons should be sensitive to this interrelationship. Although difficult, facing terminal illness, death, and bereavement can be a stimulus for spiritual growth. It is expressed in a variety of ways both formal and informal, religious and secular, including, but not limited to: symbols, rituals, practices, patterns and gestures, art forms, prayers, and meditation.
Spiritual needs can arise at any time. A caring environment should be in place to enhance and promote spiritual work at any time. The spiritual needs of dying persons and their families may vary during the course of the illness and fluctuate with changes in the physical symptoms. The medical team needs to be alert to the varying spiritual concerns that may be expressed during different phases of illness. Patients and their families are particularly vulnerable at the time of impending death. Caregivers need to recognize their limitations and make appropriate referrals when the demands for spiritual care exceed their abilities or resources.
Spiritual well-being is depicted as “the affirmation of life in a relationship with God, self, community, and environment that celebrates wholeness.” Spiritual care offers the patient and the family a profound resource for coping with the various challenges of life. The palliative care team must recognize the significance of existential and spiritual issues as modifiers of physical symptoms and quality of life. They also understand spiritual needs and their interdependence with physical and psychosocial aspects of human experience. They must aware the significance of personal spiritual issues and counter-transference as determinants of caregiver effectiveness as a healer.
Our palliative care team includes several clinical Buddhist chaplains who had received at least 3-month clinical training course about palliative care field and are qualified by our palliative care unit training board. They get no payment and come by compassionate and will be requested to other palliative care unit after they finish the training course with quailed certificate. They take primary spiritual care of 7~ 10 patients under the supervision of the senior chaplain tutor and the head nurse and the director of the team in their daily practice. They participate in the routine ward meetings and case discussion and weekly teaching rounds and give the suggestions of specific spiritual care to palliative care teamwork. The training course is very busy. They must present the formal case report by paper and bedside demonstration at monthly “clinical Buddhist chaplain teaching seminar and bedside round” in the form of specific spiritual care forum. Because the Taiwanese traditionally regard the Dharma master as the funeral advisor, then patients usually reject the clinical Buddhist chaplains at the first visit. The clinical Buddhist chaplains have to set up the good relationship with patients and their family initially and even accompanied by their primary care physician and nurse via introducing the role of the clinical chaplain, and then understand the potential for realistic hope, healing and a sense of inner peace, integrity and wholeness that is independent of physical well-being of patients.
To get a better understanding on spiritual essence for terminally ill patients, we designed a questionnaire to define spiritual essence based on Buddhism. We started with the following Buddhism’s perspectives: 1. Spiritual essence is not identical as physical and psychological. It is also not different from them. 2. The spiritual essence has a relative connection with causes and condition. 3. It can not be created or destroyed. 4. It has a natural compassion but can be attained with enlightenment. 5. It can communicate with the natural world mutually. 6. The final stage can remove all the suffering and obtain spiritual happiness. In the clinical perspective, there are three stages of spiritual realm: high, moderate and low. The spiritual stage of patients could be upgraded under the spiritual care, more obvious with the guidance of the appropriate dharma practices by the clinical Buddhist chaplain.
When terminally ill patients facing the worsening symptoms and the deeming death, spiritual care can significantly diminish the death fear and promote the inner strength of transference. The dharma practices are according to the Buddhism “Six Paramita” (six perfections): Charity, Morality, Forbearance, Effort, Meditation, and Wisdom. They can be conducted by reading the sutra, reciting the holy names of Buddha, acting on worship, and meditating on inner peace, and so forth. Others are guilt-ridden about some real or imagined “sins” and are greatly relieved when we offer them an opportunity to share them, especially in the presence of a clinical Buddhist chaplain. These patients all feel better after the ritual of convert and “confessions”. Our art therapists created the drawing image of the face of Avalokita Bodhisattva as a non-verbal communication method. The clinical Buddhist chaplain can accompany patients draw the painting. Most of them feel calmly and concentrated, and may write down some words or sentences of the personal perspectives about life by themselves. Some wonderful words or sentences can inspire other patients and medical team and will further be the good memorial of the bereaved family.
Our clinical Buddhist chaplain can reach their service to other wards as the form of palliative shared care team. If the patients approach the active dying process and no family caregivers can accompany them, the clinical Buddhist chaplain will coordinate the death preparation and be present with the dying patients even in the viewing room even for eight hours long. And they also participate in the formal bereavement activities to support the bereaved family. The goal of their service is to help patients overcome the death fear and approach the good death. A good death includes awareness of the death, accepting it peacefully, arranging one’s will properly, and timing the death appropriately. Our teamwork do the assessment of good death after patients’ death every week to audit the quality outcome of the patients’ dying process. At that time, clinical Buddhist chaplains often give the important information about spiritual well-being. And they also let the palliative team know and learn how to approach the good death by spiritual care.
Palliative care teamwork, especially clinical Buddhist chaplains, can help patients identify the individual meaning of their life and death via providing ‘logo-therapy’ and traditional Dharma practices to good death. In palliative care, there may be potential for personal growth and transcendence, and further support for the bereaved family. Ongoing involvement with dying and bereaved persons may cause a severe drain of energy and uncover old and new spiritual issues for the caregiver. Then spiritual education, growth, and renewal should be a part of a staff support program.
Reference:
1. Elisabeth Kubler-Ross. On Death and Dying. Scribner 1969, New York.
2. Neil MacDonald, etc.. Palliative Medicine: A case-based manual, 2nd ed. Oxford University Press 2005, New York.
3. TNEEL (Toolkit for Nursing Excellent at End of Life Transition) CD, version 1.0. Developed by D. J. Willikie & TNEEL investigators 2001.
4. Albert R. Jonsen, etc.. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. 6th ed. McGraw-Hill 2006, USA.