Palliative Care Effects on Caregivers: Strategies and Standards

Positive Effects of Palliative Care on Caregivers

Palliative care has several positive effects on the caregiver. These can be divided into emotional, social, psychological, and physical effects. The first is the positive psychological effect that enables the caregiver — whether a nurse, personal care worker, or family member — to cope with a demanding role. One study found that when patients died with unrelieved suffering, nurses would also endure enormous suffering of their own (Bailey, 2008).

The impact on nurses arises largely from their perceptions of patient suffering. Nurses feel distress when they believe a patient is in a difficult situation and sense that they are unable to help during moments of acute need. They also carry feelings of failure, bearing the burden of the patient's unrelieved pain (Barclay & Maher, 2010).

Some nurses have also described the impact of unrelieved pain on the relationship between the patient and their family. They noted that palliative care helped them to build a stronger relationship between patient and family, allowing all parties to benefit substantially.

Emotional, Social, and Psychological Benefits for Families

Research published in the New England Journal of Medicine found positive emotional, social, and psychological effects of palliative care on caregivers. The study showed that proper palliative care, when provided alongside standard medical treatments, helps improve the quality of life of both the patient and their family (Temel et al., 2010).

Palliative care prevents depression in family members and patients, and enables the patient to live longer, allowing families to build a stronger relationship with the patient. The study found that palliative care is associated with these improvements because it is aimed at making patients feel better. It incorporates standard treatments in a way that improves wellbeing compared to standard medical treatment alone, which often makes patients feel worse at the outset.

The social status of family members of patients receiving palliative care is also improved. As caregivers, family members face the challenges of the patient's illness and must manage caregiving expectations, adapt their daily lives to provide support, and take on additional responsibilities. Families also benefit emotionally and psychologically from palliative care because they can see that their patient is comfortable and well cared for during the illness. Even when the patient dies, family members are more able to accept that the patient died a peaceful death while receiving optimal medical, nursing, spiritual, and psychological care. Meier (2011) posits that a family's perceptions of the care provided to their patient affect their own health and how the family functions as a whole. Providing palliative care to patients therefore benefits family members significantly.

Family members also benefit indirectly from palliative care: when the patient experiences a reduced level of physical, psychological, and social distress, family communication is no longer strained, enabling stronger relationships. Family members feel more able to sustain their relationship with the patient when they can see the patient is not suffering and is being well cared for physically, mentally, medically, and psychologically.

The Learning Component of Palliative Care

Palliative care also has positive effects on nurses and families as a result of its educational component. Palliative care is often intended to educate the family about the patient's condition, disease progression, and the care being provided — medical, psychological, physical, and mental — thus giving family members, nurses, and other caregivers the opportunity to discuss their concerns and fears. Family members benefit from a deeper understanding of the patient's situation and experience increased confidence in the range of care being provided.

The nurse also benefits from this learning component, as it allows the nurse to share information about the patient's situation with family members, explain the care being provided, and thereby receive support from the family (Downar et al., 2010). When family members support the nurse's actions, it becomes easier to administer treatment, as the nurse feels empowered and confident to provide the necessary psychological, spiritual, physical, and mental care.

Boyd and Murray (2010) argue that family members of patients receiving palliative care are hidden patients who also benefit from the care itself. When the patient feels distressed, family members are equally distressed and carry guilt about being unable to comfort the patient or provide medical assistance. When they see the patient receiving appropriate care, they feel reassured that, even though they cannot provide that care themselves, they made the right decision and their patient is receiving the best care possible.

References

Bailey, F. A. (2008). "I am not afraid of dying. I just don't want to be there when it happens." Medical Care, 46, 1195–1197.

Barclay, S., & Maher, J. (2010). Having the difficult conversations about the end of life. BMJ: British Medical Journal, 341, 653–655.

Boyd, K., & Murray, S. A. (2010). Recognising and managing key transitions in end of life care. BMJ: British Medical Journal, 341, 649–652.

Cavanaugh, T. A. (2008). Double-effect reasoning: Doing good and avoiding evil. Clarendon Press.

Downar, J., Sibbald, R., & Lazar, N. M. (2010). Ethical considerations for classifying patients as 'palliative' when calculating Hospital Standardised Mortality Ratios. Journal of Medical Ethics, 36, 387–390.

Emmert, M., Pohl-Dernick, K., Wein, A., Dorje, F., Merkel, S., Boxberger, F., Mannlein, G., Joost, R., Harich, H.-D., Roland, T., Christof, L., Neurath, M. F., Hohenberger, W., & Schoffski, O. (2013). Palliative treatment of colorectal cancer in Germany: cost of care and quality of life. The European Journal of Health Economics, 14, 629–638.

Fenstad, E. R., Shanafelt, T. D., Sloan, J. A., Novotny, P. J., Durst, L. A., Frantz, R. P., McGoon, M. D., & Swetz, K. M. (2014). Physician attitudes toward palliative care for patients with pulmonary arterial hypertension: results of a cross-sectional survey. Pulmonary Circulation, 4, 504–510.

Koffman, J., Morgan, M., Edmonds, P., Speck, P., & Higginson, I. J. (2009). Vulnerability in palliative care research: Findings from a qualitative study of Black Caribbean and White British patients with advanced cancer. Journal of Medical Ethics, 35, 440–444.

Meier, D. E. (2011). Increased access to palliative care and hospice services: Opportunities to improve value in health care. The Milbank Quarterly, 89, 343–380.

Narabayashi, M., Saijo, Y., Takenoshita, S., Chida, M., Shimoyama, N., Miura, T., Tani, K., Nishimura, K., Onozawa, Y., Hosokawa, T., Kamoto, T., & Tsushima, T. (2008). Opioid rotation from oral morphine to oral oxycodone in cancer patients with intolerable adverse effects: an open-label trial. Japanese Journal of Clinical Oncology, 38, 296–304.

Palliative Care Australia. (2014). The national standards. Retrieved September 26, 2014, from

Pergolizzi, J., Boger, R. H., Budd, K., Dahan, A., Erdine, S., Hans, G., Kress, H. G., Langford, R., Likar, R., Raffa, R. B., & Sacerdote, P. (2008). Opioids and the management of chronic severe pain in the elderly: Consensus statement of an International Expert Panel with focus on the six clinically most often used WHO Step III opioids. Pain Practice, 8, 287–313.

Reese, D. J. (2013). Hospice social work. Columbia University Press.

Saunders, M. M. (2009). Indicators of health-related quality of life in heart failure family caregivers. Journal of Community Health Nursing, 26, 173–182.

Temel, J. S., Greer, J. A., Muzikansky, A., Gallagher, E. R., Admane, S., Jackson, V. A., Dahlin, C. M., Blinderman, C. D., Jacobsen, J., Pirl, W. F., Billings, J. A., & Lynch, T. J. (2010). Early palliative care for patients with metastatic non-small-cell lung cancer. New England Journal of Medicine, 363, 733–742.