So this post is going to be very long because I do not know how to upload this as a link. This paper was written for my multicultural health class. The assignment was to choose a culture and describe a medical condition that affects them; the paper had to include the etiology and treatment for the disease, the cultures understanding and treatment of the disease, barriers they may have to health care, and creating a culturally competent treatment plan. So here is my paper:
Death in the Absence of Belief
Caring for secular Americans with terminal cancer
America, it has been claimed in recent years, is a Christian Nation. This estimation is slightly at odds with the original view of America as a melting pot of people from all races and religions where religious freedom was desirable. According to the website of the Pew Research Forum, America’s religious breakdown is as follows: 52.2% Christian (all varied groups), 23.9% Catholic, 11.1% Secularist[1] (this includes Atheists, Agnostics, and those who refuse to give or do not have an answer), 5.8% religious but unaffiliated, 1.7% Mormon, 1.7% Jewish, 0.7% Buddhist, 0.7% Jehovah’s Witness, 0.6% Muslim, 0.4% Hindu, 1.2% other religions. Here we can see that the non-religious are the third largest religious group in America, yet they are one of the least understood. In fact, in the textbook for HPRF135 at San Jose State University Transcultural Health Care only mentions atheism three times, while agnosticism and other secular belief systems are not mentioned at all. Potter & Perry (2006) in Fundamentals of Nursing included a paragraph about the atheist/agnostic belief system in the chapter on Spiritual Health and emphasizes the need to respect this belief system, though it is noted that “traditionally, the manner in which spirituality has been assessed in health care settings is an interpretation of Judeo-Christian spirituality (Potter & Perry, p. 550).” In researching secular issues in medicine, there is a woeful lack of information, though religious and spiritual issues are well represented. This paper will discuss palliative and end of life care for secularists with terminal cancer.
Cancer is a serious medical problem for all Americans, and secularists are no exception. According to the National Cancer Institute website, “it is estimated that 1,437,180 men and women (745,180 men and 692,000 women) will be diagnosed with and 565,650 men and women will die of cancer of all sites in 2008.” Cancer crosses all racial, ethnic, and cultural boundaries. It affects all ages, from fetuses to centenarians. Cancer has been, and in many ways continues to be, the most feared disease among the populous. This stems from the fact that many people are uneducated about the how cancer develops, which varies depending on the site and cause of the cancer. Also, in the past, cancer was considered a death sentence. Research has yielded many answers over the past decades. Huether (2008) defines cancer as “a collection of many different diseases, all caused by an accumulation of genetic alterations (p. 222).” The American Cancer Society website reinforces this, noting that all cancers arise from damaged cellular DNA, which can be caused by any number of environmental factors including bacterial and viral infections, toxins such as tobacco, and others such as UVA & UVB rays. If the body fails to repair the damaged DNA or the immune system does not kill the cell, abnormal growth can occur. Cancerous growths present with certain genetic and physiological markers. Huether (2008) describes the physiological markers of cancerous growths as follows: rapid growth rate, invasion of surrounding tissue, transfer of mutated cells to unrelated tissues (metastasize), lack of normal cell differentiation (anaplastic), and rapid mitotic division (p. 223). No one intrinsic or extrinsic factor leads to the proliferation of cancer cells; instead cancerous tumor formation and metastazation is a result of a combination of genetic and environmental factors that allow for the mutation and growth of these abnormal cells. According the National Institute of Cancer website, prognosis (including probable disease progression and probability of treatment efficacy) is based on the type & location of the cancer, the stage of the disease (how much it has metastasized), and the grade of the tumor (based on the abnormality of the cells and how fast they replicate & spread). Medical staff will typically address the client in terms of their five year survival rate. Prognoses are subject to change based on the patient’s response to the treatment regimen and may indicate that the patient has a small chance of survival, even with treatment.
First it should be noted that there is no cure for cancer at this time. The goal for a patient who is diagnosed with cancer of any site is remission. There are a variety of regimens currently used in the treatment of cancer and their use is determined on a case-by-case basis with respect to the location, growth rate, and evidence-based treatment. According to the Stanford cancer research website, the most common therapies are chemotherapy regimens, radiation therapy, and tumor removal; although other treatments including experimental treatments are available. Often multiple therapies are used concurrently to increase the probability of putting the cancer into remission. However, when the cancer reaches an advanced stage where the detrimental effects of the treatment outweigh the possibility of remission, the patient may choose palliative care. This means that the patient has chosen to treat only the symptoms of the illness, with the understanding that these treatments will not result in remission. Lewis, et. al. (2007) states that palliative care is an active process that may continue for many years and often includes administration of analgesics to alleviate pain and comprehensive care for the patient’s emotional well-being. In some states, such as California, patients may use medical marijuana to treat symptoms of pain, nausea, and anorexia. This law was approved in 1996 and reaffirmed in 2004, despite contradicting Federal Controlled Substance laws. For most patients, opiates are the preferred medication for treatment of pain, though they often must be administered with a myriad of other medications (such as anti-emetics) to manage the side effects from the opiates. Care for the patient’s emotional health is a more complex issue and is entirely dependent on the patient’s cultural, spiritual, and religious practices.
For secularists, there is no mystery about the cause of this disease, nor are there any “magical” remedies for cancer. Quite the opposite is true; a secularist will likely receive the diagnosis of cancer, discuss treatment options with their physician, then seek out second and possibly third opinions before determining the correct course of treatment for them. This is because, for the secularist, knowledge is the first step to plotting any logical course. On www.nogodblog.com the question was posed regarding palliative care for atheists. Though there were differing opinions, the response was overwhelming that they would look for treatment as possible, but they would accept death as it approached. This is not to say that these individuals will not experience the myriad of emotions felt by religious people, they will simply fail to either blame or turn to a cosmic power to cope. Instead they are more likely to turn to knowledge and action. If their prognosis is poor, they are likely to lend themselves to experimental research & trial treatments if they are available. Whether their cancer is in the terminal stages or not, secularists are generally strong supporters of aggressive research. For example, stem cell research is widely supported by secularists because of the potential to develop new treatments and find true cures for cancer, not just treatments that effect remission. If there is nothing to be done, secularists are likey to focus on the quality of life rather than quantity. Smith-Stoner (2006) found that an overwhelming majority of atheists in her study would prefer physician-assisted suicide because it would allow them to die on their own terms and with dignity. `
This group can experience a variety of barriers to health care that may match the general barriers experienced by Americans including low socio-economic status, lack of education, and inaccessibility such as in rural settings. However, atheists may experience these barriers to a lesser degree than the general population due to higher levels of education and income, which often are indicators of increased access to adequate health care benefits. In fact, according to the Pew Research Forum, 35% of Secularists have a Bachelors Degree or higher[2] as opposed to 27% of the general population. With respect to income levels, 23% of Secularists earn more than $100,000 per year[3] as opposed to 18% of the general population.
One barrier to treatment for these individuals (and for all cancer patients) is the opposition to stem cell research by the dominant religious culture in the United States. The Secular Coalition of America patently supports all forms of stem cell research, including embryonic stem cell research, because stem cell research is likely to provide the key to curing many debilitating diseases and injuries. Sam Harris (2006) notes that there is no end to the good that stem cell research could do. Everything from Juvenile Diabetes to cancer, spinal cord injuries to Alzheimer’s could eventually be cured. Currently the government has blocked funding for certain types of stem cell research at the urging of the religious “right” in this country.
For secularist patients whose cancer is terminal, the most significant barrier to healthcare is likely to come when the healthcare provider attempts to address the spiritual health of the patient. Current research supports the importance of incorporating spiritual health for patients, particularly those with terminal illnesses. Janiszewska, et. al. (2008) found that spirituality significantly decreased anxiety in women with end-stage breast cancer. While spiritual discussions are often approached with trepidation by healthcare workers, with the majority of patients there is at least the mutual belief in a higher power to bridge the gaps between individual belief systems. This bridge is non-existent when the patient is a secularist. While some healthcare workers may seek to understand what comforts and gives hope and purpose to the secularist patient, most will find themselves flummoxed, leading them to giving inadequate spiritual care to the patient. Lewis, et. al. (2007) note that healthcare workers should not assume that because the patient is not religious means that they are not spiritual. One need only watch the passion with which biologist Richard Dawkins speaks about the elegance of the cell to see that secularists can indeed find purpose and meaning in the world around them. Chochinov & Cann (2005) note that spirituality can include a recognition or connection with “a reality greater than the self (p. 106).” Where secularist patients may require increased support is if their family is either unaware or unsupportive of their beliefs.
Secularists are an extremely diverse group with regard to their cultural patterns of communication. Generally speaking, men and women are seen as equal and are given equal voice in a relationship. The biggest cultural consideration for secularists is the family dynamic. Some secularists belong to a family group with a homogenous view point or they may have willingly and openly discussed their end of life wishes with their family, despite spiritual differences. However, this is generally not the case. Many secularists are part of a family group with very different views from the patient (be they Judeo-Christian, Muslim, or other). The family may or may not be aware of the belief system of the patient. This may cause serious distress for the patient as they make known their wishes for their after-life care. The health care team will need to support both the patient and the family to accept and plan to carry out the patient’s wishes.
How then could a health care team approach the care of a 28-year-old woman who has just received a diagnosis of Stage-IV metastatic breast cancer? She has been generally healthy her entire life; she exercises regularly and is a vegetarian. She has been married to the same man for nine years and they have two children, ages 4 and 8. She has been an atheist her entire adult life, though she was raised Catholic. Her husband is a life-long Catholic who is aware of her spiritual beliefs and is very respectful of them. The remainder of her family members belong to a variety of Christian denominations; including her father with whom she is very close, though she has never confided to him that she does not believe in a higher power.
Her prognosis is six months survival without treatment, and one year survival with treatment. She is currently hospitalized and under the care of her physician and the nursing staff. Assembly of a multi-disciplinary team to give optimal care to this patient is essential. There are three goals that must be met for this patient: the physical well-being of the patient, the emotional well-being of the patient, and the emotional well-being of the family. The physician holds the ultimate responsibility for the physical well-being of the patient, which involves thoroughly explaining all of her treatment options. Smith-Stoner (2006) emphasized the need for a two-pronged approach by the healthcare team to the emotional well-being of the patient and the family. First, the team must providing patient-centered care that involves completing a plan with the patient without a discussion of religion and encouraging the patient to make their wishes known by way of an advanced directive. Second, the team should provide family-centered care by aiding the family to connect with a religious provider who can help them to cope with the patient’s impending death and the patient’s choices for themselves.
The first priority of the nursing staff is to assess the patient’s emotional status and determine her progression through the stages of grief. Lewis, et. al. (2007) describes three models to determine the stages of grief which may be experienced by the patient and her family. The rational for this is that if the patient is in the stage of denial for example, she may not be cognitively competent to understand her treatment options and make decisions. It is the job of the team to assess the client and aid her to be prepared to discuss her treatment options with her physician. The patient may choose to undergo standard therapies, experimental therapies, or palliative care.
Regardless of her choice of treatment, her nurses play a central role in addressing the client’s spiritual health. Upon admission, patients are asked if they have a religious preference. In this patient’s chart it is simply stated “no religious affiliation.” As the nurse, it is essential to define what belief system the client ascribes to. According to Lewis (2007) the nurse can determine this information by approaching the client with an open mind. By asking open-ended, non-judgmental questions, the nurse can determine that the client is an atheist and what this means for her perspective on her current situation. A pitfall for the nurse at this stage would be to assume that because the client is an atheist, she is not spiritual or that she must be hopeless. Atheists find purpose in life and hope in many diverse ways and it is the nurse’s job to determine how the patient views these. The most important way the nurse can accomplish this is by listening. The nurse should also assess for spiritual distress. Carpenito-Moyer (2007) identifies “Spiritual Distress” and “Impaired Religiosity” as nursing diagnosis for terminal patients. The major defining characteristic of these is a disturbance of current belief system. This would be evidenced by confusion regarding her professed worldview. Even if she maintains her worldview and draws strength from her own belief & spirituality, she may experience a dilemma over whether she should now disclose her beliefs to her family. In addition, she may suffer anxiety related to decisions regarding choices for her treatment after passing – namely, should she allow a religious service or insist on a remembrance gathering. These are all questions where the interdisciplinary healthcare team can aid the patient.
Emotional care for the patient’s family will be essential. The nuclear family will require intervention by a family therapist and a grief counselor. The patient’s husband may benefit from introduction to community support groups. Special care should be taken to ensure that the patient’s children are informed and involved in the patient’s care to the extent that the patient desires. As for the extended family, enlisting the help of the chaplain may be a great benefit. Smith-Stoner (2008) notes that the chaplain can provide the family spiritual support without affecting the patient. The chaplain may also be able to intercede if the patient chooses to disclose her atheism. The chaplain can help the family to accept the patient’s beliefs and wishes for her future care.
When it has been determined by the physician that the patient has less than six months before they are likely to pass away, the patient should be referred to hospice care. Hospice care can provide the multi-disciplinary team required to aid the patient and their family to accept and prepare for the patient’s passing. In addition, they are best equipped to provide the patient as much quality of life and painlessness possible until they pass. In addition, hospice is typically an outpatient process, so the patient can be at home where she can be comfortable and in the care of her family. The most important emotional care needed for this patient will be providing her and her children care from a multi-disciplinary team including a grief counselor, therapist, and social worker to provide them a quality close to her life. It will be important to allow the patient to express her death to her children in language she feels is appropriate. For example, the patient may not want to tell her children that she is “going to a better place;” she may want to express it instead that she will “be alive in their hearts and memories.” The therapist can help her to define how she wishes to express her death to her children. This will be a painful emotional process and every effort should be made to reduce the patient’s anxiety prior to her passing and her children’s long-term emotional anguish.
The end of life is the most definitive moment for all people because it is the final step into the unknown. It is a highly emotional process and should not be marginalized for any group due to a lack of understanding. While there are many studies regarding spirituality (which is often equated with religiosity) at the end of life, there is still a huge void of information when discussing end of life care for persons without faith in a higher power.
References:
American Cancer Society (2008) www.cancer.org Accessed 27 Nov 2008.
Americans for Safe Access www.safeaccessnow.org/ Accessed 2 Dec 2008.
Carpenito-Moyet, L. (2008) Handbook of Nursing Diagnosis (12th ed.). Philadelphia:
Lippincott, Williams, & Wilkins.
Chochinov, H., & Cann, B. (2005) Interventions to Enhance the Spiritual Aspects of Dying.
Journal of Palliative Medicine, 8(1), 103-115. Accessed 27 Nov, 2008 from
http://www.sjlibrary.org/research/databases/index.htm?getType=3
Council for Secular Huminism (2008) www.secularhumanism.org Accessed 27 Nov 2008.
Harris, S. (2006) Letter to a Christian Nation. New York: Alfred A. Knopf.
Huether, S., McCance, K., Brashers, V., Rote, N. (2008) Understanding Pathophysiology (4th
ed.). St. Louis: Mosby.
Janiszewska, J., Buss, T., Walden-Galusko, K., Majkowicz, M., Lichodziejewska-Niemierko,
M., & Modlinska, A. (2008) The Religiousness as a Way of Coping with Anxiety in
Women with Breast Cancer at Different Stages. Support Care Cancer, 16, 1361-1366.
Accessed 27 Nov, 2008 from
http://www.sjlibrary.org/research/databases/index.htm?getType=3
Lewis, S., Heitkemper, M., Dirksen, S., O’Brien, P., & Bucher, L. (2007) Medical-Surgical
Nursing: Assessment and Management of Clinical Problems (7th ed.). St Louis: Mosby.
National Cancer Institute www.cancer.gov Accessed 28 Nov 2008.
Potter, P., & Perry, A. (2005). Fundamentals of Nursing (6th ed.). St Louis: Mosby.
Purnell, L., & Paulanka, B. (2008) Transcultural Health Care (3rd ed.). Philadelphia: F. A.
Davis Co.
Rosielle, Sinclair, & Quinn (2005) www.pallimed.org Accessed 26 Nov 2008.
Secular Coalition for America (2008) www.secular.org Accessed 27 Nov 2008.
Sinclair, D. www.nogodblog.com Accessed 1 Dec 2008.
Smith-Stoner, M. (2006) Planning for End of Life for Atheists: Results from a Pilot Study
Accessed 27 Nov 2008 at http://nursestoner.com/documents/Athiests%20public.pdf
Stanford Cancer Center (2007) http://cancer.stanford.edu/ Accessed 28 Nov 2008.
The Pew Forum on Religion & Public life www.pewforum.org Accessed 28 Nov 2008.
[1] This term will be used throughout to denote non-religious individuals, namely agnostics & atheists.
[2] Further breakdown is as follows: Atheists 214/509 (42%); Agnostics 355/825 (43%); secular unaffiliated 598/1995 (30%) =1167/3329 (35%)
[3] Further breakdown is as follows: Atheists 123/439 (28%); Agnostics 183/730 (25%); secular unaffiliated 354/1686 (21%) = 660/2855 (23%)
If you read this and wish to cite it for a paper you write that is fine. My name is S. K. Paez and the paper was written December 2, 2008. Please do not plagiarize my paper.
Posts
