Discussion Questions 1
The benefits of palliative care for a patient with a terminally ill disease are numerous. First, palliative care follows a patient-centered holistic approach that focuses on the mind, body, and spirit. Palliative treatment includes the psychosocial, spiritual, pain management and management of symptoms that are specific to the patient. The palliative care team is made up of physicians, nurses, social workers, and other staff that help formulate a treatment plan to ease the transition from disease fighting to providing comfort and quality of life. In the case of Mr. J., chemotherapy was not going to change the disease process, therefore a referral to palliative care would help alleviate the patient’s needs associated with end-of-life care. Palliative care would help facilitate communication between the medical team, the patient, and the patient’s family’s current needs and goals. It would allow the patient to have more control over decisions of care while receiving extra support and understanding to continue living life. Any symptoms and stress associated with the illness would be better managed and the family can receive support and coping strategies to better deal with the management of care. Lastly, the burdens associated with hospital costs and treatment would decrease, both for the family and the hospital facility.
The primary idea behind palliative care is asking the patient and their family questions specific to their needs and goals. Since palliative care does not target the prognosis or the disease itself, it’s important to work together as a team to alleviate any burdens that can prolong or cause additional stress. For instance, if the daughter is busy keeping the patient company, it will be difficult to tend to their family and cook meals.
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The palliative team could help find strategies such as a meal preparation and delivery programs that may assist in providing services to the patient and his daughter. Another idea would be to assess the patient’s home environment and determine if there are any special arrangements that can be made to facilitate the patient’s daily living routines.
Another benefit of palliative care is the management of symptoms associated with their illness or disease. Cancer patients suffer from severe pain, and medication usually comes with serious side effects such as constipation, nausea, and vomiting. The palliative team would assess Mr. J.’s pain level and determine the most appropriate medication for him. If Mr. J. continues to exhibit signs of hypoxia, the palliative care team could provide the necessary equipment to keep his oxygen levels from declining further. Improving Mr. J.’ symptoms will directly improve his quality of life, plus accomplishing his daughter’s wishes of making him more comfortable. In addition, palliative care addresses symptoms of depression, anxiety, and stress by providing counseling services and support to the patient and their family. In this case, I believe the daughter would benefit from palliative care for emotional support while she is coping with her father’s illness.
The cost of healthcare services is another added stress that the family has to take on. Many times, the physicians will continue to order tests and medications so the family sees them attempting to do all they can to save their loved one. In many occasions, the physicians know that no matter what treatment plan they implement, nothing will reverse the course of the disease, but still they feel pressured to keep ordering more interventions. All these unnecessary treatments end up costing a fortune and the family is overwhelmed with the bills and hospital statements.
Palliative care has shown to reduce the cost of treatments and the financial burden that families go through and provide a treatment plan that has shown to be of a more positive intervention for the patients. In some cases, palliative care has extended the life of many terminally-ill patients and improved their mood and understanding of the disease. This has led to a better attitude towards life itself and a more positive response from the families as well.
Discussion Questions 2
The first potential barrier for Mr. J. and his family will most likely be explaining what palliative care consists of, its benefits and limitations, as well as the associated costs versus other treatment options. Many patients and/or their families have never heard of palliative care, and some only relate it to end-of-life care and advance directives type of conversations. Mr. J.’s daughter will most likely want to know how palliative care would be implemented into Mr. J’s ongoing medical care, how it would be different from current medical interventions, and specifically how it would benefit her father.
Second barrier would likely be the idea that if they accept palliative care, then their ongoing medical treatments and interventions will stop completely. Mr. J.’s family comes from a Hispanic cultural background, and Hispanics tend to equate aggressive treatments to better prognosis. Generally, Hispanics tend to avoid difficult conversations about the prognosis of the disease and steer clear from discussions involving advance directives. A common sentiment is to keep their family member on a ventilator as long as possible versus letting them go.
A third barrier consists of the idea that pain medication can be too aggressive and can potentially turn the patient into an addict. In this case, Mr. J. has metastasis to the femur and his non-verbal behavior has suggested that his pain is not being managed appropriately. Mr. J. is suffering, as evidenced by his increased agitation and confusion, and the appropriate goal should be to provide as much comfort as possible by first addressing the cultural barrier in regard to pain management.
Discussion Questions 3
Patient education should be the first strategy the nurse should implement with Mr. J. and his family. Palliative care is patient-centered, which means there will be a treatment plan tailored specifically to Mr. J.’s goals and needs The nurse should explain that palliative care is a team of healthcare staff consisting of physicians, nurses, social workers, and a support team, and along with Mr. J.’s current medical team, they come up with a plan of action on how to better address his needs. Palliative care focuses on improving the patient and his family’s quality of life, while still providing necessary medical treatments. Studies have shown that palliative care reduces the overall cost of medical treatment while providing more beneficial interventions to the patient and family.
Another strategy would be to contact specialized staff within the palliative team, to help the family navigate the complexities of the medical system and provide them with the necessary information to make educated decisions. In Mr. J.’s case, he suffers from dementia, as well as metastasis to the femur. Mr. J.’s caregivers will need assistance managing the changes of the disease process, such as an inability to move, loss of coordination, and the decline of sensory processing ability. The decline in health will bring about questions on available options and legal documentation that can potentially overwhelm the family unless there’s a support team ready to assist them.
In order to overcome the cultural barrier on the issue of pain management, the nurse would need to help refocus the family’s attention on the primary goal of palliative care, which is to provide comfort, alleviate symptoms, and enhance the quality of life as best as possible. This cannot be done if the patient is suffering with severe pain because of the wrong medication or incorrect dosage. The palliative care team, along with the patient’s current medical team, will reassess the patient and determine what would be the best treatment option. It’s important to let the family know that there are very few cases of patients going through end-of-life care that develop addiction problems, and the focus has to be on alleviating Mr. J.’s severe pain.
Discussion Questions 4
Since I come from a Hispanic cultural background, the biggest challenge for me will be to avoid making generalizations within the Hispanic culture that I have witnessed. I have learned that even within the same culture, you can find a very diverse set of beliefs. For me, topics of full code and keeping the patient alive through mechanical ventilation for the sake of extending their life are just not something that my family and I support, however I completely understand a family’s want to keep their loved one alive for as long as possible, no matter the cost.
I believe it will also be a bit of a challenge dealing with family members of a patient that has a Hispanic cultural background when dealing with providing and disseminating information.
I am aware that Hispanic families tend to leave the patient somewhat shrouded from their medical prognosis and treatment plan. The families tend to discuss the situation, come up with a plan, and then share the news or plan with the patient, possibly. There may be instances where the family doesn’t ever share the prognosis or plan for fear that it will dampen the patient’s spirit and worsen their condition.
Discussion Questions 5
I have experienced some of these cultural barriers within my own Hispanic family. My mother has reoccurring chest and low back pain, resulting in severe pain and routine trips to the emergency room. She believes that the doctor knows best, whatever their course of action would be. She feels that since the doctor has attended years of additional schooling and represents an elevated status within the community, then there is no second-guessing, he/she must know best. I find it difficult to get through to her to get a second opinion or seek out alternative treatment plans, but she holds firm to her cultural beliefs.
Additionally, my mother has been placed on a scheduled pain medication treatment plan. She is supposed to go in for shots into her spinal area every few months, yet she is deathly afraid of the shots and feels she will either become addicted or maimed somehow. As such, she skips her appointments and the pain inevitably returns. She suffers in bed unable to walk for several weeks until the pain becomes so unbearable that she forces herself to go get her injection.
If she were referred to palliative care, I believe the team would get to know my mother, and in doing so, they would learn of her fears associated with injections and work to find alternative way to provide her the necessary treatments. They would also alleviate her fear of becoming addicted to the pain medication since she will likely be on a scheduled dose regimen.
Discussion Questions 6
I feel that my personal perspective will actually be a benefit when dealing with patients from a Hispanic cultural background and their family. I will be able to anticipate some of the questions, hurdles, and struggles, and hopefully provide information and answers during these tough times.
I will be compassionate and draw upon my own dealings within my family and offer a perspective that only one from that cultural background can. It may seem miniscule, but I also believe that since I grew up in South America and I am fluent in Spanish, it would be a comfort to explain and converse with them in their native language. Familiarity brings comfort, and I would be able to provide that.
Part II
The Room
The location of where I would like to die might change drastically when my kids get older but for now, I would like to die in the comfort of my home. The scent of home will bring a feeling of serenity and peace. I would like my family photos on my nightstand, plants with flowers, my favorite bedding, and with the windows wide open as to allow the sun to shine bright upon me.
The Hat
I would like to have my husband hold my hand one more time as he has done so many times before. It will bring comfort knowing that after a lifetime together, he can now walk me down to the end of a fairytale love story. It would be great to have my dog next to me as well, to let me cuddle her one more time. At this moment in my life I wouldn’t want my kids to be close to me because that’s not how I would want them to remember their mom.
Panic Button
I don’t want to die alone; I don’t want to be left somewhere to suffer in pain without anyone hearing my calls. Also, I wouldn’t want to feel the suffocation of dying from shortness of breath. Most importantly I don’t want to die feeling like I wasn’t able to contribute to society or that my life was a waste of time.
References
- Fischer S.M., Cervantes L., Fink R.M., Kutner J.S. (2015) Apoyo con Cariño: A pilot randomized controlled trial of a patient navigator intervention to improve palliative care outcomes for Latinos with serious illness. Journal of Pain and Symptom Management, 49 (4), pp. 657-665.
- Alper, J., & National Academies of Sciences, E. and M. (U. S.). (2016). Health Literacy and Palliative Care : Workshop Summary. Washington, DC: National Academies Press. Retrieved from https://search-ebscohost-com.msmc.idm.oclc.org/login.aspx?direct=true&db=e000xna&AN=1253612&site=eds-live&scope=site
- Esch, A. (2019, August 14). Living Well With Lung Cancer – Palliative Care Can Help. Retrieved from https://getpalliativecare.org/
- Juarez, G., Ferrell, B., & Borneman, T. (1998) Influence of Culture on Pain Management in Hipanic Patient. Culture and Cancer Pain, 6(5),262-269
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