Getting prepared for death can be an exhausting experience for the patient and their family. It is very important that the patient not only knows what they want as far as their right to receive or reject treatment and medications or knowing whether they want to receive palliative care at home or in a hospital setting to include the advantages and disadvantages of each. The main focus of this paper is to give the reader an in depth look on how an end of life crisis affects a patient and their family. Ella is a breast cancer patient who just came out of remission and is at the end of her life.
Her and her husband John along with other members of her family are not in agreement with her end of life plans because of cultural indifferences. The reader should be aware of the importance of patient’s rights and how these rights tend to bring about psychological and social changes with the patient and their caregivers especially when dealing with a chronic illness like breast cancer. This paper will focus not only on Ella’s beliefs regarding her end of life care and how her decisions and this situation will affect her family but it will also consider the biological makeup of her and her condition. It will also analyze how cancer affects the people involved in Ella’s care at the micro, mezzo, macro levels, and her lifespan development. Scenario
Grandmother Ella has been dealing with cancer for years now and has tried alternative remedies and juicing. She went into remission for some time, but now the cancer has returned and she is in the hospital. Her husband, of American Indian descent, who is into traditional methods of treatment has his own ideas about what needs to be done as Ella comes to the end of her life. Ella has her preferences, though she is now so weak that she has given up in many ways. The family members are each experiencing their own fears and are grieving as they face the loss that will occur as Ella’s life comes to a close. Ella prefers to die at home and has felt stressed by the discord and discomfort of family members since being hospitalized. (Smith 2013).
“The scope of social work in palliative and end of life care extends across many practice settings and populations, and requires intervention at the individual, family, group, community, and organizational levels.” (Bailery, 2004). A social workers duty is to inform a patient of their options regarding care, what programs may be available to pay for care or counseling to them and their families as well as patient rights to reject treatment, autonomy, and any other alternatives or options that the patient has. As Ella’s social worker it is imperative that she is assisted with all of her psychological, social, environmental, economic and health care needs, that she’s treated fairly, not harmed, respected, and patient confidentiality is not broken. This will be done by showing compassion and remaining neutral while making sure that Ella is treated equally, has a good support team, is in a fit environment if released for at home palliative care, and that she receives the best care that she can get during this tring time. Ella has been treating herself by natural means.
“Medicine is at its best when it is patient-centered.” (Coyne, Calzone, Weber, 1999, para 4). Ella’s social worker should talk to Ella even though she is weak to see if she’s comfortable with setting up any advance directives such as a living will or don not resuscitate order or if she wants to delegate these decisions to her husband or other relative. These things need to be in their proper perspective to protect patient rights and assure they are adhered to. Carrying out the indicated preferences of a patient makes death and preparing for death less complicated on everyone involved in the end of life care of a patient. If a patient is dying and aware of their options the burden of death is not as heavy on them or their family. Awareness and autonomy are important aspects of having a happy peaceful death. .“As medical technology continues to advance and health care choices become more complicated, the preservation of end-of-life autonomy is an increasingly important issue faced by various client populations.” (Galambos, 1998). Cultural and Traditonal Issues
There are several cultural and traditional issues that can arise because Ella and her huband John have totally different ideas regarding treatment. “Culture is also dynamic and adaptive. It attempts to maximize the potential for group success in the face of environmental challenges, and there remains today a tension in cultural groups between maintaining shared values and norms and adjusting to forces for change both within and outs:” (Kreuter & McClure, 2004). Ella is in to alternative remedies and her husband is for traditional methods of treatment. This is a conflict of interest and being that Ella is weak she may leave decision making up to her family which will probably go against the wishes she originally set for herself. “Complementary and alternative medicine (CAM), includes a wide range of approaches like herbal medicine, traditional therapies, mind-body intervention etc., and has gained its popularity worldwide in recent years. “a group of diverse medical and health care systems, practices, and products that are not generally considered part of Conventional Medicine ” (Jaiswal et. al, 2015).
Complementary medicines have not yet been combined with the use of alternative medicine but the use of them are growing worldwide. The use of CAM can be traced back thousands of years ago. It includes the use of herbal and natural medicines such as opium, natural oils, an mineral supplements to name a few. Ella grew up on a farm and does not trust conventional methods for treating her of breast cancer. No one can really blame her there are so many side effects to medicine now a days who knows if they are actually better or worse? Not only that, alternative medicines seem to be a lot less expensive than traditional or conventional medicines; they seem to be more swift, more effective, have no side affects, are readily available and are natural. There are a few disadvantages such as they don’t work for all kinds of disease, there are food restrictions but most people that use them are already on a healthy diet anyway, and they are symtomatic. Some other problems that may occur from Ella’s continual use of alternative medicines is that her family may not think that this is the best option for her.
They may try to convence her to take traditional methods because she is weak and it will probably ease her pain. If they coerece her into taking mainstream medical advice it can cause her to be more depressed, weak, and feeling a loss of family support. This is not healthy for her. Ella’s husband can not except the fact that he is her husband and thinks that Ella should adhere to his family traditions. “Values can exert powerful influences on behavior and beliefs about what constitutes appropriate, positive, prosocial behavior in others.” (Williams & Ellison, 1996). Their values may be the same but their beliefs and traditions are obviously not. American Indian traditions include but are not limited to seeking help from traditional or spiritual healers to cure disease or the human mind, sacred fires, and ritual dances such as the sun dance to heal the sick. Ella may not feel comfortable with her husbands traditional methods since she already doesn’t trust him. This can cause a trust barrier. I can relate to Ella.
I am Muslim but grew up as a Christian and some of my family members still can’t accept this fact. When I die I want to have a Islaamic funeral. I want to be buried at the Masjid with other Muslim Ummah (followers). In a Muslim funeral a person would be buried the day after their death. My mother is disappointed because we had paid for a plot many years ago thinking that I would be buried in the cemetary with the rest of my family members. The only difference is that I am the only child, two of my three children are Muslim an my husband is Muslim as well, I also have a living will in place so my children nor my parents can go against my wishes. Biological Basis
There is a possibility that Ella is still grieving and coping with her mothers death even though she has been deceased for some time now. Her father is known as the shaky grandpa because he has Parkinson’s disease. Ella’s family has a prominent medical history that truly stands out. Ella has a 45 year old daughter with diabetes whom has struggled with weight all of her life. Her condition is worsening because she’s obese and refuses to mange and uphold a healthy diet because of all the healthy not so good tasting healthy foods her mother Ella fed her as a child. She also has a 20 year old granddaughter who has been figting with biplor disorder since she was a young girl. To top this off her oldest to grandchildren are experimenting with drugs and Lucy tries to justify her marijuana use because of her Grandmothers Ella’s beliefs in alternative medicines.
Ella also has a older son, Sam who is 50 years old and a stone cold looser that stems from his alcoholism. He has not had a relationship with his family, ex wife, or son in many years now. Culture plays an essential role in this family and everyone has different views on what medicines should be used and where Ella’s end of life care should take place. All of these factors need to be taken into consideration because substantial impact on Ella’s decision to use alternative medicine and receive palliative care at home. “The body has a wisdom of its own that, if we let it, can be tapped and used in the service of transformation, regeneration, and healing. Mind, body, and environment continually interact in a variety of changing and complex ways. Certainly, any conceptions of disease must take this into account. For example, one’s beliefs about oneself, including beliefs about the body and elements of the environment in which those beliefs arise and are sustained, can be helpful factors in the process of recovery and transformation.” (Saleebey, 1992).
These type of crisis can make a person change their mind if they think that trying something new may help since what they’ve tried to do the exact job. The main thing here is that Ella’s family is supportive with whatever she decides. Ella is to weak to try to adapt to a new environment with new people that she doen’t know or trust. And during her final days she shouldn’t have to get used to a change in her environment. Therefore Ella’s family should let her die as she wishes. Dealing with death is already stressful when you know that there is no medicine or anything that can help you feel better or sustain life.
The physical and mental health and well being of Ella’s family can have a serious impact on her healing process. The health and medical state of everyone in Ella’s environment can be in a state of depression. It can be the make or break of her recovery. From a social worker’s perspective it may not be a good idea to let Ella receive palliative care at home because her support group is just as weak as she is. “The environment and individuals in it are conceived to be in constant interaction and influence each other and the potentialities for growth and transformation within the individual are nurtured by the environment, and the individual, singly or collectively, has a shaping and beneficent influence on the environment.” (Saleebey, 1992). Palliative Care
“Palliative care is specialized medical care for those with a serious illness, whatever the diagnosis allowing them to get relief from symptoms of pain and stress at any stage of their illness. It need not be a pathway to death and patients can improve and return to relatively good health. Hospice care is end-of life palliative care meant to enhance the quality and dignity of life for terminally ill patients and their families, either at home or in a medical care facility.” (Springer,2013 , para 11). “Home-based care was conceived as a means of alleviating the strain on overburdened and under-resourced hospitals whilst providing better and more holistic care to patients living with life-limiting illnesses such as cancer.” (Omoyeni et. al, 2014). The advantages of palliative care at home is that you’re comfortable with your settings and surroundings. In the home setting there is a better quality of life and it’s less stressful.
When you receive care in a hospital setting it’s depressing and you think of or hear of people who are there and are not living making a person’s self esteem decrease in the belief that they may make it and defeat the disease they are fighting with. Some disadvantages of palliative and hospice care at home is that family members and friends may be willing to do as much as they can for the patient but they are not professionals. That’s why as Ella’s social worker it is imparitive that I educate this family as much as possible on how to take care of Ella and what to do in an emergency situation. As mentions previously stress and depression by and between the patient and family members is also a disadvantage most care givers in a hospital setting are not that stressed by their job and even though they can get attached to patients they just do their best to treat them and make them feel comfortable while going about their life it is not that simple for a family member who is giving care. A patient’s rights should be respected regardless of who agrees or disagrees with their beliefs.
When dealing with cancer patients such as Ella there is a need to determine what is better and more convenient for her and her family in regards to where she spends her last days. As with anything in life there are advantages and disadvantages. So, of course there are advantages and disadvantages of receiving palliative care at home opposed to other settings such as a hospital. “A good death is discursively organized around two nodal clusters: control, autonomy and dignity, and awareness and heroism. One way in which an aware death is constructed as a crucial part of a good death includes the assumption that a conscious planning of the own death allows the dying person to say goodbye to his family and friends in a proper way ” (Van Brussel & Carpentier, 2012).
“Adaptation is a continuing process of adjusting the individual’s energies, motivation, and skills to meet environmental demands in such a way as to enhance growth and development and to accomplish life transitions successfully.” (Saleebey, 1992). Ellas family seem to be adapting to one anothers environment. Lucy is using marijuana to treat her bipolar disorder and Josh is using it with his friends both of them might think its okay because it is a complementary medicine and that’s what their grandmother likes better even though she doesn’t use marijuana. Their Uncle Sam’s alcohol abuse (environment) may as well have something to do with their use of drugs. Effects on Family
Ella’s end of life crisis can be an intense experience for not only her and her husband but her whole support team. They are probably in shock that Ella’s cancer has come back attacking her strong. Being that Ella has been in remission for some time her husband for one may not know how to handle his emotions because he is seeing his wife in a tremendous amount of pain and there is nothing he can do to help her because she is dying. Furthermore, some people are stubborn and he may not accept her decision in not taking traditional medicines to reduce the agony and grief that she may be feeling. He may not want to have a part in the decision making process since she won’t accept his traditions, even though he wants to and knows it his duty. Sometimes the pain and hurt of knowing that you are going to loose a loved one will make you just want to sit back and practically do nothing.
The same for Ella’s children but everyone has to be strong and support Ella when she needs them the most. She just came out of remission so even though they knew she had cancer they have been watching live a regular life for some time know and may not be able to deal with seeing their grandmother or mother in her current state. When a patient decides to get hospice or palliative care at home the family will endure things that are unimaginable in taking care of their loved ones.Ella’s support group need to find the time and energy to make Ella feel comfortable and not feel like a burden on her family. It is hard for anyone to adjust to working a normal job and taking care of a normal family to taking care of a loved one who is all of a sudden on their death bed. It’s a transistion and a process that takes time which this family doesn’t have much of. Sometimes family members try to hide their feelings of being frustrated, scared, worried, or angry but they should all support each other because everyone is hurting and they will need to offer the same typeof support after Ellas death.
This can also establish a stronger bond and build rapport between care givers and Ella’s family members. It is important for the social worker to emphasis how to support and take care of Ella and the options they have for counseling and support groups. To conclude there are many factors that come into play when caring for a dying patient and it is the social workers responsibility to make sure that the patient is comfortable, understands their options, knows their rights, and to help the family and patient get through their crisis. Psychological, biological, and social factors can make a difference in how a patient or caregiver feels in participating with end of life care. A persons environment can determine if they will live a pleasant and healthy death or one feeled with agony and lack of family support. No one has the right to make you feel like you methods for treatments or your rights shouldn’t be adhered to regardless of the medical situation. It is important that a patient who has a chronic illness and a culturally diverse family to discuss their options before a critical time such as this and patient autonomy is what matters most in any situation. Have advance directives in place so that planning your death is burdensome on you or your family.
Bailey, G. (2004). NASW Standards for Social Work Practice in Palliative and End of Life Care. Retrieved May 20, 2015, from https://www.socialworkers.org/practice/bereavement/standards/default.asp Coyne, J. C., Calzone, K., & Weber, B. L. (1999). Use of alternative medicine by women with breast cancer letter].The New England Journal of Medicine, 341(15), 1155-1157. Retrieved from http://search.proquest.com/docview/223956820?accountid=32521 Jaiswal, K., Bajait, C., Pimpalkhute, S., Sontakke, S., Dakhale, G., & Magdum, A. (2015). Knowledge, attitude and practice of complementary and alternative medicine: A patient’s perspective. International Journal Of Medicine & Public Health, 5(1), 19-23. doi:10.4103/2230-8598.151243 Omoyeni, N. E., Soyannwo, O. A., Aikomo, O. O., & Iken, O. F. (2014). Home-based palliative care for adult
cancer patients in Ibadan–a three year review.Ecancermedicalscience, 8(474-494), 1-7. doi:10.3332/ecancer.2014.490 Saleebey, D. (1992). Biology’s Challenge to Social Work: Embodying the Person-in-Environment Perspective. Social Work, 37(2), 112-118. Smith, S. (2013) Introduction to the Miller family [PDF]. College of Health, Human Services, and Science. Ashford University: Clinton, IA. Springer, R. (2013, October 4). Aging Indian Americans: Need Growing for Culturally-Sensitive Palliative Care. (cover story).India — West. pp. A1-A26. Williams, E. E., & Ellison, F. (1996). Culturally Informed Social Work Practice with American Indian Clients: Guidelines for Non-Indian Social Workers. Social Work, 41(2), 147. Van Brussel, L., & Carpentier, N. (2012). The discursive construction of the good death and the dying person: A discourse-theoretical analysis of Belgian newspaper articles on medical end-of-life decision making. Journal Of Language & Politics, 11(4), 479-499. doi:10.1075/jlp.11.4.01van Kreuter, M. W., & McClure, S. M. (2004). The role of culture in health communication. Annual Review Of Public Health, 25(1), 439-455. doi:10.1146/annurev.publhealth.25.101802.123000