Essence of Palliative Care: Significance of Psychological and Spiritual Aspects
Palliative is patient and family centered care that optimizes quality of life. It is an approach that improves life of an individual and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice of care. According to Loscalzo (2008), Institute of Medicine (IOM) report defines palliative care as “prevention and relief of suffering through the meticulous management of symptoms from the early, through the final stages of an illness. Palliative care attends to the emotional, spiritual and practical needs of patients and those close to them.”
Thus, palliative care doesn’t only include patients facing life limiting illness but also embraces people around them i.e. family, loved ones, friends etc. This paper will reflect on Psychological and spiritual domains in palliative care as these are the connective tissue of our fragmented health care system. A 43 year old woman was admitted with the diagnosis of metastasis soft palate carcinoma at Bait-ul-Sukoon with the primary purpose of palliation. During the course, we tried to address various needs of that patient including physical, sexual, psychological, and spiritual as well as end of life (EOL) needs.
Throughout our presence that patient was drowsy, few family members have accepted that she is in palliation and soon she’ll leave them whereas, few were still denying the reality. Round the clock patient was surrounded with family members; they were reciting the holy book and praying, else were talking to her making her feel warmth that even at this time they were all with her trying to face the situation calmly and courageously. The greatest challenge to humans in delivering appropriate care for critically ill patients is related to psychosocial adjustment and not the technological ability to prolong life, manage physical symptoms or to maximize comfort (Loscalzo, 2008).
Psychological domain includes individual’s own perception and understanding of the issue and its related coping mechanism. It depends on how situation is appraised by individual and family. It is presented that high levels of distress is found in about 33% of cancer patients overall. The distress adds burden to the patients’ and families as they attempt to integrate complex information, manage intense emotions, make life-focused decisions, distribute family resources, and cope with the ongoing demands of work and daily living. (Loscalzo, 2008)
In the given scenario, patient was drowsy all the time as she was being administered morphine sulphate as palliative sedation whereas family’s distress was apparent. Being a nurse, we explored the reasons of distress and encouraged family members to ventilate their feelings of despair, sadness and addressed their concerns related to disease process, prognosis and available treatment modalities. As according to National Cancer Institute, 2011, it is important for health care professionals to explore with families any fears associated with the disease and time of death. Stress was also associated with physical care of patient, but with our presence made them feel more relaxed and gave a helping hand in their crisis situation.
With distress caregiver also reports high level of stress, poor physical care and health maintenance, poor emotional health, negligence of own health and typically non-compliance (Schubart, Kinzie&Farace, 2008). Family was provided with emotional support and was emphasized on own health maintenance. It is widely observed that member who is in hospital with patient has typical stress related to household chores, siblings and family’s significant others. During our presence family was given time for relaxation and were encouraged to go out and have some snacks that diverts their mind from same situation and enables them to better cope with them.
Similar to distress and role strain anxiety is also common in patients receiving palliative care that can reduce a patient’s tolerance for physical distress, especially pain, and may impair functioning. Anxiety may also arise in response to illness related stressor as observed in our case that not only patient, family was also anxious about care for patient, disease process and its dreadful reality (Pessin, Rosenfeld & breitbart 2002). Spirituality is the unifying life force which integrates the biological, psychological and social components according to individual belief system. Spiritual coping consists of religious methods such as, prayers and non-religious strategies like talking to other patients with similar ailments.
It applies to both believers and non-believers. It is oriented towards therapeutic communication by the caregiver’s availability and actual presence to patient. Patient’s spirituality was impaired throughout as being in hospital. It entails individuality, self-awareness and knowledge of spiritual care.
Family had strong belief in spirituality and they were encouraged to do all their rituals according to their values and beliefs. They were reciting holy book with true core concept of purity in their heart as Baldacchino, 2011 says that spirituality integrates not only religiosity but also other coping strategies which may help individual to find meaning and purpose in their life. As spiritual care is caught from role modeling rather than taught (Baldacchino 2011). In comprehensive review of literature, it was found that there are still large educational gaps among nurses, physician, social worker, patients and family related to palliative care (Loscalzo, 2008).
Thus, on individual level it is important for a health care professional not to neglect psychological care and spiritual aspect as without it holistic approach is unmet. Nurses should show their keen interest in developing their skills pertinent to these aspects as these can be adopted through role modeling rather than be formally taught. Nurse should be enough self-aware of his/her believe (especially spiritually) while caring for client in that domain. Literature also highlights that minimal attention is given to psycho-social and spiritual domain and this is may be due to lack of time, work overload, feeling of incompetence to deliver these care and finally lack of education in undergraduate curricula (Baldacchino, 2011).
It is also important that health care providers have the ability to identify the impact of their work and engage in efforts to recognize and address any negative consequences. The use of self-reflective practice can assist in clarifying the source of burnout or grief (Fraser health hospice palliative care, 2009). On institutional level it is crucial to add these domains in their professional education and institutions are responsible to keep informed the nurses about current knowledge according to new literature. Thus, research also recommends that spiritual care should be integrated in nursing education and nursing practice as a philosophy of care in order to enable delivery of holistic care (Baldacchino, 2011).
Furthermore, Baldacchino, 2011 in his article teaching on spiritual care also says that learning on spiritual dimension in care may help the professionals to realize their current care which may motivate them to become change agents by implementing patient-centered care and meeting patient’s needs holistically. Likewise, there should be strong communication pattern among nurses, physician and families in the form of counseling or disclosure of information or ongoing updating patient’s health status. For that ongoing education forum should be introduced so that it could be emphasized. Thus according to schubart et.al (2008) emphasizes that an effective practice strategy should include; providing clear communication of information about the individual patient’s diagnosis and treatment.
Patients with poor health literacy are more likely to benefit from an emphasis on the information they need to act on, with detailed facts available as a secondary resource. In conclusion, providing palliative care to patients and their families can be extremely rewarding, it can also be stressful and emotionally draining. The exposure related to related stresses and human suffering can lead to adverse physical, emotional, social and psychological effects in which spirituality should not be overlooked. Health care provider often feels inadequately prepared to respond to questions or concerns about death and dying. Seeking to understand the meaning behind patient’s desire to die is crucial to formulate a professional response and appropriate intervention (Fraser health hospice palliative care, 2009).
Baldacchino, D. (2011). Teaching on spiritual care: The perceived impact on qualified nurses. Nurse Education in Practice. 11 Pp. 47-53 DOI: 10.1016/j.nepr.2010.06.008
Last days of life (2011). National Cancer Institute. Retrieved from: http://www.cancer.gov/cancertopics/pdq/supportivecare/lasthours/healthprofessional/page1/AllPages/Print
Loscalzo, M. (2008). Palliative Care and Psychosocial Contributions in the ICU. Pain Management And Supportive Care For Patients With Hematologic Disorders. Pp. 481-490.
Duarte, CA. Pessin, H., Rosenfeld, B. &Breitbart. W. (2002). Assessing psychological distress near the end of life. American Behavioral Scientist. 46(3). Pp. 357-372. DOI: 10.1177/000276402237769
Schubart, J., Kinzie, M., &Farace, E. (2008). Caring for the brain tumor patient: Family Caregiver burden and unmet needs. Neuro-Oncolgy. 10(1). Pp. 61-72 DOI: 10.1215/15228517-2007-040 (2009).
Fraser health hospice palliative care. Practice Advisory Council. Retrieved on July 29th 2012
About the Author: Hina Zulfiqar done BSc in Nursing from Aga Khan University, School of Nursing and Midwifery. She can be reached at [email protected]
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