Not just the beginning … Celebrate the end of the story
The birth of a baby is usually a celebratory moment, filled with smiles and sometimes tears of joy recognizing a new life. Death is often a somber, sad time with feelings of loss and tears. But what if we could always celebrate the end of life similarly to the beginning, with joy; as an achievement; praise the many days and years of existence; and a time to honor memories of times past.
The end of the story can be just as significant as the beginning.
Healthcare technology is growing at a rapid pace providing advancements to extend life, save life, and manage illness. Statistically across the U.S. people are living longer, however, more people are dying in hospitals and long term care facilities, medically bound, instead of in their homes surrounded by loved ones (Coombes-Lee & Grube, 2017; Meghani & Hinds, 2015; Teno, Freedman, Kasper, Gozalo & Mor, 2015). People are not dying at home unless on hospice care, most often, in which family members were found to report care as excellent over two times more than patients not receiving hospice care in the last month of life (Teno et al., 2015). In a policy brief summarizing the Institute of Medicine (IOM) report exploring end-of-life care delivery and quality of life in the U.S., four key findings were significant:
- People nearing the end of life often experience multiple transitions between health care settings, including high rates of apparently preventable hospitalizations, which can fragment the delivery of care and create burdens for patients and families.
- Demand for family caregiving is increasing, and the types of tasks performed by family caregivers are expanding from personal care and household tasks to include medical and nursing tasks, such as medication management.
- Palliative care is associated with a higher quality of life, including better understanding and communication, access to home care, emotional and spiritual support, well-being and dignity, care at time of death, and lighter symptom burden. Some evidence suggests that, on average, palliative care and hospice patients may live longer than similarly ill patients who do not receive such care.
- Although professional guidelines and expert advice increasingly encourage oncologists, cardiologists, and other disease-oriented specialists to counsel patients about palliative care, the widespread adoption of timely referral to palliative care appears slow. (Meghani & Hinds, 2015, p.52).
Why aren’t we discussing end-of-life before illness? Addressing death, or talking about end-of-life, is often taboo, leading to facing the fact that life ends. Tackling it may create a sense of fear or sadness, wanting to avoid the idea of losing someone. Many wait until decisions have to be made in acute illness or emergency, often in a state of panic or turmoil. A normal conversation we should be having is about what we want at the end of our own story.
The IOM (2014) made multiple recommendations for quality end-of-life, including referral to hospice or palliative care specialist depending upon condition and prognosis, management of pain, family and patient counseling, family caregiver support, routine personalized care planning, and attention to the patient’s social, cultural, spiritual and religious needs.
Questions to think about:
- Have you talked about death? Do you know what your choices are?
- Who would you want to make decisions for you if you were unable to make decisions?
- Who might you be responsible for making decisions for? Do you know what they would want?
- Have you thought about and documented plans for end of life, burial, and financial matters?
Having a plan, provides an opportunity for end-of-life to be exactly what you believe it should be. The stress of decision-making or guessing what your wishes would be may no longer be a concern for those who love you. Demonstrate love for one another by engaging in end-of-life conversations early, and with clear thought in health, rather than illness.
For more information about opening discussions or making decisions for end-of life:
Death over Dinner. (2018). Retrieved from http://deathoverdinner.org/
Coalition for Compassionate Care. (2018). Retrieved from http://capolst.org/
Want to Dig Deeper?
For more end-of-life reading and stories:
Ted ED by Peter Saul: Let’s Talk About Dying
Profeta, L. (2016). How we used to die; How we die now [Blog]. Retrieved from
https://www.exopermaculture.com/2016/01/19/how-we-used-to-die-how-we-die-now/
Ted Talk by BJ Miller: What Really Matters at the End of Life
Byer, R. C. (2007). A Mother’s Journey, 2007 Pulitzer Prize for Feature Photography.
Baruch, J. (2017). When death is near, end-of-life care decisions go out the window [Blog]. Retrieved from https://www.statnews.com/2017/12/14/end-of-life-care-decisions/
Lien, C. (2017). Transition to comfort focused care. Decision Support Medicine: Cancer Therapy Advisor. Retrieved from http://www.cancertherapyadvisor.com/hospital-medicine/transition-to-comfort-focused-care/article/603863/?DCMP=OTC-CTA_trendmd-mar&dl=0&utm_source=trendmd&utm_medium=referral&utm_campaign=march-traffic-drivers-cta
Other resources and references:
Coombs-Lee, B. & Grube, D. (2017). Medical aid in dying: The cornerstone of patient-centered care. Journal of the American Society on Aging, 41(1): 39-41.
Institute of Medicine [IOM] (2014, September). Dying in America: IOM Committee’s proposed core components of quality end-of-life care. Retrieved from https://www.nap.edu/resource/18748/Table—Core-Components-of-Quality-Care.pdf
Meghani, S. H. & Hinds, P. S. (2015, February). Policy brief: The Institute of Medicine report Dying in America: Improving quality and honoring individual preferences near the end of life. Nurse Outlook, 63(1): 51-59. http://dx.doi.org/10.1016/j.outlook.2014.11.007.
Teno, J. M., Freedman, V. A., Kasper, J. D., Gozalo, P., & Mor, V. (2015). Is care for the dying improving in the United States? Journal of Palliative Medicine, 18(8): 662-667. DOI: 10.1089/jpm.2015.0039
