Quality of Life

Quality of Life and Functioning

SZT1 Task 2

Quality of Life and Functioning
Personal Beliefs End of life and quality of life questions have ridden waves of media attention for the last thirty years since 1987, when Dr. Jack Kevorkian first started advertising “death counseling” and eventually created his death machine and acted in his first assisted suicide ("The real jack," 2013). Prior to becoming a nurse, this author already had very strong feelings in regard to quality of life and end of life issues. Being exposed to long-term nursing home care with my grandmother, and in interactions with my parents, I formed a belief that when a person is no longer able to function independently and comfortably, there is very little value to living for living’s sake only. These early experiences have led me to a belief in strong support of patients and their families rights to make decisions on withdrawal of care, comfort measures, dignity in dying and even as far as supporting self determinate euthanasia for terminally ill patients. I believe that in this regard, people treat animals better than their loved ones. I have found it very “comfortable” and almost easy to help families through the decision making process for withdrawal of care and Do Not Resuscitate orders (DNR). Supporting families and patients in their last minutes has been immensely rewarding. I have great respect for medical professionals and the families that put their trust in those involved in palliative care and hospice. However, these belief systems have provided many challenges in my nursing career as I have dealt with many families who are unwilling to “let go” of a dying family member. The difficulty is in supporting these families as I watch the patient suffer through intractable pain or multi system organ failure. There is a thin gray line between advocating for the patient and serving the family as part of the nurse’s responsibilities. In looking at the scenario posed in this task, I have mixed feelings on the care and the support, or lack there of, this patient is receiving. While I have my own beliefs, I am constantly challenged at minimum respect the decisions of others. The husband in this scenario has stretched himself to the limit caring for his wife. The problem I have is with the adult children who find it too painful to be present with their mother. By remaining conscious of my own biases, I have been able to act impartially in this regard. However, as emotional as end of life topics are, I am constantly challenged put my own beliefs aside for my patients benefit.
Strategies
In interpreting this scenario, this author sees the emotional and psychological strain of the illness on all the family members as the greatest challenge. Exploring respite care options to relieve caregiver burnout in regard to the patient’s husband would be the first priority. I would explore possible referrals for spiritual or secular counseling for all family members in addition to the patient. Mrs. Thomas’ fears of her husbands suicidal ideations must be evaluated by a professional. Medication compliance for the husband with strategies to ensure med compliance would also be assistive. Support groups, online or in person might also be beneficial for the family. This patient’s level of function has decreased significantly recently due to uncontrolled pain. In a palliative or hospice setting the patient needs to recognize the benefits as well as the risks of pain and anxiolytic medications. This nurse would educate the patient regarding pain medication and addiction. The patient could also benefit from a combination of long acting, short acting and breakthrough pain medication to relieve her discomfort and allow her a higher level of function (Ediger & Rogowski). Regarding narcotics and addiction in this scenario, Douglas C. Throckmorton, MD, deputy director for regulatory programs at the FDA’s Center for Drug Evaluation and Research, the discussion is more about end-of-life issues. “End of life needs to focus on appropriate management of pain. That’s not a question,” Throckmorton said. “For a patient without end-of-life concerns, pain management may be different” ("Access to pain," 2011). Given the patient’s poor prognosis, an interdisciplinary team should evaluate and discuss hospice with the patient and her family. By changing the focus from treatment (in regards to chemotherapy) and focusing on improving the comfort and quality of life for the patient, this author believes that the entire family may be able to become more engaged during Mrs. Thomas’ last days. The resources available through hospice can also provide assistive devices and durable medical equipment that improve her function and lessen the burden on her husband as the primary caregiver.
Plan of Action In this scenario, the first step is an assessment of needs of the patient. Utilizing Maslow’s Hierarchy of Needs, this nurse would evaluate the patient and the family in parallel with the following priorities: 1. Physiological- the patient’s pain and discomfort must be addressed. The input of a physician with an understanding of pain management could help the patient overcome her fears of addiction and allow her to receive a level of pain relief that can bring her out of her bedroom and permit her more involvement in her self- care. 2. Safety- Mr. Thomas is at risk. His mental health status must be stabilized both for his safety and Mrs. Thomas’. As her primary caregiver and the only other person in the home, he must be stable. 3. Love/ Belonging- reaching out to the patient’s children should be attempted. Mr. and Mrs. Thomas have become isolated from the community out of fear of “bothering” friends and co-workers. Involvement of the patient’s family can not only assist with physical needs but provide immense emotional support during this difficult period. 4. Esteem- in this area I believe is an opportunity to empower the patient by discussing hospice and other options with the care team. The patient and her husband have the opportunity to direct the focus of her treatment and provide for her perceived needs. 5. Self-Actualization- according to Maslow, if the basic needs listed above are not met one cannot move toward satisfying the next level of need. By ensuring that Mrs. Thomas’ needs above are addressed she can have an opportunity for positive reflection at the end of her life. This process is not accomplished in a single visit or a single assessment. Mrs. Thomas has many opportunities for self-care at this point. With proper medication management her level of function can be elevated and the other areas listed can be addressed. However as the course of the disease progresses her abilities will decline. Hospice and the resources available through the program can be immensely beneficial during this time. Durable medical equipment such a hospital bed can provide for her comfort. Assistive devices can be provided such as a cane, walker and wheelchair as her mobility decreases. For activities of daily living, visiting nurses and aides can help with bathing and feeding. Ultimately, if the family with the addition of these resources is unable to continue, there are several options for residential hospice (at least in my part of the country).
Mr. Thomas As a Patient In developing a plan of care for Mrs. Thomas, the nurse cannot overlook Mr. Thomas as a patient as well. Evaluating Mrs. Thomas’ belief that her husband may be suicidal must be a priority in this nurse’s plan of action. While it may be simply an issue of medication compliance, a discussion with Mr. Thomas where the nurse has an opportunity to assess his mental health status must occur including an exploration of the reasons behind his compliance. If the nurse finds that, indeed, Mr. Thomas is suicidal, appropriate measures must be taken to ensure he receives a formal mental health evaluation at an emergency psychiatric facility. Referral to his mental health provider is definitely warranted. In regards to the stress in Mr. Thomas’ life, the nurse could work with Mr. Thomas to find ways to minimize these stressors. This could include benefits such as Paid Family Leave as well as payments from the state for the care he provides to his wife. This could relieve some of the financial burden and give him time away from work to care for her. The nurse should also reach out to the adult children to assess ways that they can become part of the overall plan of care. Mr. Thomas is currently shouldering all of the burden and the support of family could greatly benefit him and his wife.

References
The real jack kevorkian, patient's rights council. (2013). Retrieved from http://www.patientsrightscouncil.org/site/the-real-jack-kevorkian/
Ediger, A., & Rogowski, T. (n.d.). Assessment and care planning of the palliative client. Retrieved fromhttp://palliative.info/teaching_material/AssessmentAndCarePlanning-OfThePalliativeClient.pdf
Access to pain management hampered by addiction fears, government regulations. (2011, July 10). Retrieved from http://www.healio.com/hematology-oncology/palliative-care/news/print/hematology-oncology/{9802e715-6066-4eac-b202-2e85a161f9ac}/access-to-pain-management-hampered-by-addiction-fears-government-regulations