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R.M. Fink
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MS 09 - Worldwide Perspective/Review of Limitations, Resources, Programs and Accomplishments of Supportive Care and Palliative Care Multidisciplinary Teams, by Continent (ID 27)
- Event: WCLC 2015
- Type: Mini Symposium
- Track: Palliative and Supportive Care
- Presentations: 1
- Moderators:R.I. Lopez, A. Oton
- Coordinates: 9/07/2015, 14:15 - 15:45, 108+110+112
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MS09.04 - Patient and Caregiver's Perspective (ID 1884)
14:15 - 15:45 | Author(s): R.M. Fink
- Abstract
- Presentation
Abstract:
Palliative care has been shown to improve outcomes for patients with life threatening illness and patients at the end of life, including decreasing symptom burden, improving quality of life, and working with patients and families to help ensure that the medical and nursing care provided is congruent with goals and preferences. Palliative care, focusing on assistance with advance care planning, decision-making, pain and symptom management, psycho-social support, and patient navigation, has the potential to improve care quality and reduce medical service utilization.[1] In a randomized controlled trial (RCT) of a palliative care intervention, Temel and colleagues demonstrated that patients with advanced lung cancer who received early palliative care had better quality of life, less depression, and lived longer.[2] The American Society of Clinical Oncology[3] and other organizations have published position statements supporting the need for oncologists, nurses, and other clinicians to participate in difficult conversations with patients regarding prognosis, preferences, and palliative care options earlier in the course of illness. Patients and their caregivers (family and/or significant others) need to be part of the discussion about care goals at the time of diagnosis, during treatment, and at the time of recurrence. Shared decision-making about end-of-life care must be based on patient/family caregiver beliefs, values, and preferences.[4] Developing rapport with patients and starting the conversation about care goals is often difficult and time-consuming. Often, patients do not understand the difference between palliative care and hospice and may not want to participate in a palliative care program because of their concern that health care providers are “giving up” on them. In a survey of health care professionals, barriers to goals of care discussions with seriously ill hospitalized patients and families include: patients’ and family members’ difficulty accepting a poor prognosis and understanding limitations/complications of life-sustaining treatments, family member disagreement about care goals, and patient incapacity to make care decisions.[5 ] Interventions to improve communication and shared decision making about plans and goals of care are key and must take into account cultural and spiritual preferences. Cultural and linguistic barriers increase disparities in providing palliative care for ethnic minorities. Patient and family cultural values have a major impact on care preferences at the end of life for some ethnic minorities and should be considered by the health care professional. Cultural, spiritual, and religious values often influence how palliative care and pain/symptom management are perceived and accepted. While nationwide averages of completed advance directives are low for all groups, patients of ethnic minority are less likely to have a living will, durable power of attorney, or a Do Not Resuscitate (DNR) order, are more likely to choose very aggressive care in the face of serious or incurable illness, and less likely to acknowledge their terminally ill status.[6] Palliative care and hospice services are rarely accessed by non-Caucasians. In addition, expanding evidence suggests that adequate pain and symptom assessment and management is not achieved for many persons with late stage disease; pain occurs in approximately 80% of patients with life-threatening illness.[7] Solano et al. found breathlessness and fatigue were present in >50% of patients with cancer and COPD.[8] All of these barriers suggest that improving palliative care access may have benefit for patients and their family caregivers. However, tertiary palliative care cannot grow fast enough to meet the demand. Models of care that promote primary palliative care are required in outpatient, community, homecare, and rural settings to maintain the capacity for the ever-growing needs of patients and their family caregivers. Primary care physicians and nurses play important roles in delivering palliative care, and may in fact not have the knowledge and skills to do so effectively. Significant barriers to integrating palliative care include lack of access to palliative care resources to implement change, personnel constraints, inadequate basic knowledge about palliative care strategies and communication, and little training, skills, or certification in palliative care.[11] It is imperative for health care professionals to improve their knowledge about palliative care, support the provision of early palliative care, and establish relationships with patients to understand values and preferences. Dr. Atul Gawande, in his recent book Being Mortal, suggests that patients be asked five key questions to open discussion about care goals.[12] These questions include the following: 1. What is the understanding of your current health and condition? 2. If your condition worsens, what are your goals? 3. What are your fears? 4. Are there any tradeoffs you are willing to make or not? 5. What would a good day be like? Additional suggestions and strategies to improve communication with patients and their family caregivers in the palliative care setting will be discussed in this presentation. 1. Ferris FD, Bruera E, Cherny N, et al. Palliative cancer care a decade later: accomplishments, the need, next steps -- from the American Society of Clinical Oncology. J Clin Oncol 2009;27:3052-8. 2. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010;363:733-42. 3. Peppercorn JM, Smith TJ, Helft PR, et al. American society of clinical oncology statement: toward individualized care for patients with advanced cancer. J Clin Oncol 2011;29:755-60. 4. Curtis JR, White DB. Practical guidance for evidence-based ICU family conferences. Chest. 2008;134:835-43. 5. You JJ, Downar J, Fowler RA, et al. Barriers to goals of care discussions with seriously ill hospitalized patients and their families: a multicenter survey of clinicians. JAMA Intern Med February 2, 2015;epub E1-8. 6. Smith AK, McCarthy EP, Paulk E, et al. Racial and ethnic differences in advance care planning among patients with cancer: impact of terminal illness acknowledgment, religiousness, and treatment preferences. J Clin Oncol 2008;26:4131-7. 7. Kutner JS, Bryant LL, Beaty BL, Fairclough DL. Time course and characteristics of symptom distress and quality of life at the end of life. JPain Symptom Manage 2007;34:227-36. 8. Solano JP, Gomes B, Higginson IJ. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Sympt Manage 2006;31:58-69. 9. Fink RM, Oman KS, Youngwerth J, Bryant L. A palliative care needs assessment of rural hospitals. J Pall Med 2013;16(6):638-644. 10. Gawande A. Being Mortal: medicine and what matter in the end. New York: Metropolitan Books, Henry Holt and Company, 2014.
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