Category: Palliative and Hospice Care at End-of-Life

Hospice and Palliative Care Cross-Culturally

The World Health Organization defines palliative care as a holistic, multidisciplinary team-based approach for patients and their families[1]. There are several diagnoses that lead to palliative care, with the primary being terminal cancer. Over 20 million people are estimated to require palliative care at the end of their life every year. Of those 20 million, 69% are over age 60 and another 6% are children.[2] Throughout this article, we focused on a case study of an individual with successful palliative care despite the cultural clash between Confucian ethics in Chinese culture and western medicine. Cross culturally, we see ebbs and flows of successful palliative care as well as global organizations, such as WHO, that are establishing policies to ensure care.[3]  However there are still disconnects when it comes to delivering care that is effective, satisfying to the patient, and cost effective. Different ethics are to be considered when integrated palliative care across the globe, but one similarity that is universally established is the wish and desire to end life comfortably.

Pain Management and Effects

Mr. C., a 75-year-old Chinese man with metastatic colon cancer, who had progressed through many courses of chemotherapy, was admitted to a hospital for treatment of pneumonia. He lived with his partner and two children that primarily made the decisions regarding Mr. C’s life. This family strongly believed in Confucianism bioethics that influenced care plan in Singapore. Certain Confucian ethics do not encourage autonomous decision making because cultural beliefs describes a vertical and horizontal viewpoint. The “horizontal” viewpoint describe the importance of building and focusing on relationships. Therefore, illness is taken into consideration of the entire family instead of the patient alone as seen in the US. Due to Confucian belief, family members are more likely turn down the medication in order to help pain tolerance as a result of cultural piety instead interest in care. The religious tradition of Confucianism is to prolong life rather than maintain comfort in the end of life. In Mr. C’s case, initially the family was aiming to cure his terminal disease rather than maintain a comfort level that result in the end of his life therefore they turned down a medication suggested by his palliative team.[4] Not only does this type of familial conflict increase levels of discomfort in pain, but it can also interrupt the mental health of the patient which can ultimately affect their overall condition.

Patients with terminal illnesses often develop anorexia or dysphagia. Therefore, families and patients often request forms of nutrition or fluids. Ethically, providing the patients with what their families request is not always the best solution for the betterment of the patient. Considering this is difficult for people with no medical education background to understand, such as in cases seen around the world, it becomes harder for doctors to decide when to draw the line. Doctors often make the difficult decision to use their judgement rather than what the patients or their families deem best for their health. For example, people with illnesses like anorexia and dysphagia can be easily sent into distress from the fluids or nutrition. In cancer patients, the nutrients can be absorbed by cancer cells which then contradicts the goal of non-maleficence that most caretakers have set out to achieve.

A quicker and effective solution to pain management over mental health concerns are usually with the use of opioids. Opioids are widely used as pain relief but there is reasonable concern regarding the possibility of future addiction. The International Association for Hospice and Palliative Care (IAHPC) states that countries need to make decisions on how many opioids that are importing or creating based on the predicted need of future individuals suffering from the previously mentioned diagnoses instead of basing their numbers on the history of their country’s prior usage.[5] Several countries have joined the Treat the Pain Program which looks into both the supply and demand side of using opioids for pain relief across the world.[6] They also looked into oral morphine as an alternative.

Figure 2[7]

Hospice Care

The variation in care lies in the still lingering difference in cultural methods of care across countries. We see conflicts arise between palliative/hospice care teams and families as culture and western medicine clash, but we also see how trends in different cultures have changed in recent years with the integration of palliative and hospice care. For example, 20 years ago, most patients in China had hospice care in the home for the end of their life. Now more than 80% of patients with end-of-life care are dying in hospitals rather than their home in order to seek space from family and peace in their last days.[8]  In a cultures where autonomous decisions are not always considered in patient care, here we are starting to see a shift toward an autonomous treatment care plan in making end of life decisions, but it still isn’t for everyone.

In most places around the world, the negative connotation that Hospice has can be alarming to many, especially the patient and their loved ones. We see this connotation take effect in Taiwan, for example. Taiwanese hospice care serves as a place to control symptoms and release the patient once they return to a stable condition. The ethical issues lie where the patient is not made aware of the severity of their condition. It is culturally accepted in Taiwan, and other oriental cultures, to essentially refuse to disclose the truth of the illness, no matter the severity. This issue is as a result of the refusal of either party to hurt the other emotionally. Even in cases where doctors attempt to tell their patient the truth, they are shut down and forced to stop by the patient’s family. For many patients, this only has harmful effects on the patients. Studies have shown that patients are able to achieve a “better death” if they are made aware of the severity of their illness and are allowed time to arrange their affairs.

This is all a normal part of the bereavement process which entails counseling and therapy for both the patient and their families. Coming to Hospice can be difficult for many because, in a way, it is accepting that death is coming to the patient. This can have a huge psychological toll on all members involved. Hospice provides psychological and spiritual support in addition to physical and medical support. This is largely because patients with serious illnesses have a high prevalence of psychological distress. 30% to 40% of patients with cancer have diagnosable depression, anxiety, or another psychiatric disorder.[9]  Other serious illnesses also have high rates of diagnosable mental health disorders. It is also important to consider the mental health of the families because stress and mental health disorders are correlated. Psychological care is often pushed to the side because it is not directly medical. However, all palliative care professionals are expected to have a basic training and knowledge of psychological issues that patients with serious illness and their families may face.[10]  As seen in Figure 1, there are several levels of psychological assessment and support that professionals can palliative care professionals can offer. Most are expected to be at Level I but most palliative care teams do not have mental health specialists, or Level IV professionals, on their team. Overall, psychological intervention is not as common within palliative care models as it should be.

Figure 1[11]

Financial Burdens/ Who is Caring for it?  

On the other hand, hospice and palliative care services have proven to be cost-effective, both in reducing the overall cost of caring for someone and providing better quality care initially.[12]  However, a major financial barrier in the United States is that most long-term insurance plans do not cover services that are necessary for good quality of life in end of life care.  Typically services cover high cost surgeries and inpatient hospital care, rather than the kind of palliative care that is needed in the homes: which includes unskilled care, such as cooking or cleaning, or transportation. Other costs to the patient that are not covered in insurance is often medication, which in turn affects the pain management of the patient. The financial burden of cost of some long-term pain relieving medication often falls on the patient or even the family of the patient.[13]  The World Health Organization states that national health systems are responsible for including palliative care in a continuum of care for people with chronic, life threatening diseases. This includes integration of palliative care services into the structure and financing or national health-care systems, integration of policies for expanding human resources to health professionals, and providing medicines policy ensuring availability to the essential medications for managing symptoms.[14]  However access to these medications and policies have not been consistent. In low-income populations, many within the US and outside of the US are less likely to use hospice care do to the cost of management and the poor distribution of services even if policies are set in place.

If the patient doesn’t have the means to take care of themselves at the end of their life, this becomes very difficult. Families often struggle with obtaining funds to sustain the life of their loved ones and there are not many facilities that are able to are willing to give a substantial amount of assistance in the financial area. When terminally ill patients are given live sustaining measures, it can be difficult to decide when to end the care. Cost is often a factor that plays a major role, but it is culturally not discussed as much as it should be. Considering ending care and ultimately the life of a loved one is not an easy task to do, and it is more difficult when the issue is money. Ethical issues concerning hospice and palliative care are difficult for doctors to discuss with patients and families, especially when government funds only assist to a certain point.[15]

Of course making large decision like the care plan for the end of life is difficult for anyone, but it is especially difficult when decision between a traditional Chinese culture is in constant flux with the Western environment. After much discussion with the family and input from a pharmacist, it was determined that morphine at low doses was safe to use with Mr. C. and his symptoms improved after immediate administration. With the palliative team, Mr. C.’s family continued nursing and providing the alternative medication. Both the family’s wishes and the patient comfort levels were met in the end, and Mr. C passed away a few days later in the comfort of his home surrounded by his family.[16]

Foreign cultural bioethics are not as far from Western bioethics as some make it out to be. It is a call for culturally sensitive communication and “wise specification of cubical principals” as well as finding a common ground for sufficient care. In Mr. C’s case, if during discussions an understanding and consensus among the patient, relatives, and physicians can be reached, there will be progress in health with palliative care.[17][18] Many countries are trying to implement palliative care policies but they aren’t all the way there yet. The IAHPC suggest an establishment of a national cancer control program wherever life-threatening diseases are more prevalent.[19]  When moving forward with the addition or improvement of palliative care policies and plans, a culturally specific and patient focused ideology is the ideal.

 

Citations:

[1] Kozlov, Elissa, Bahar Niknejad, and M. C. Reid. 2018. “Palliative Care Gaps in Providing Psychological Treatment: A Review of the Current State of Research in Multidisciplinary Palliative Care.” American Journal of Hospice & Palliative Medicine 35 (3): 505–10. doi:10.1177/1049909117723860.

[2] Connor, Stehen R. “Global Atlas of Palliative Care at the End of Life.” World Palliative Care Alliance. 2014. https://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf.

[3] Lynch, T., S. Connor, D. Clark, Mj Seya, SFAM Gelders, OU Achara, and B. Milani. “Palliative Care.” World Health Organization. February 19, 2018. https://www.who.int/news-room/fact-sheets/detail/palliative-care

[4] Zheng Jie Marc Ho. “Chinese Familial Tradition and Western Influence: A Case Study in Singapore on Decision Making at the End of Life.” JPSM Journal. December 2010. https://www.jpsmjournal.com/article/S0885-3924(10)00627-5/fulltext.

[5] Kozlov, Elissa, Bahar Niknejad, and M. C. Reid. 2018. “Palliative Care Gaps in Providing Psychological Treatment: A Review of the Current State of Research in Multidisciplinary Palliative Care.” American Journal of Hospice & Palliative Medicine 35 (3): 505–10. doi:10.1177/1049909117723860.

[6] Connor, Stehen R. “Global Atlas of Palliative Care at the End of Life.” World Palliative Care Alliance. 2014. https://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf.

[7] Kozlov, Elissa, Bahar Niknejad, and M. C. Reid. 2018. “Palliative Care Gaps in Providing Psychological Treatment: A Review of the Current State of Research in Multidisciplinary Palliative Care.” American Journal of Hospice & Palliative Medicine 35 (3): 505–10. doi:10.1177/1049909117723860.

[8] Cheng, Hon-Wai Benjamin. “Bringing Palliative Care into Geriatrics in a Chinese Culture Society—Results of a Collaborative Model between Palliative Medicine and Geriatrics Unit in Hong Kong.” Wiley Online Library. April 2014. https://onlinelibrary-wiley-com.libproxy.lib.unc.edu/doi/full/10.1111/jgs.12760.

[9] Kozlov, Elissa, Bahar Niknejad, and M. C. Reid. 2018. “Palliative Care Gaps in Providing Psychological Treatment: A Review of the Current State of Research in Multidisciplinary Palliative Care.American Journal of Hospice & Palliative Medicine 35 (3): 505–10. doi:10.1177/1049909117723860.

[10] Kozlov, Elissa, Bahar Niknejad, and M. C. Reid. 2018. “Palliative Care Gaps in Providing Psychological Treatment: A Review of the Current State of Research in Multidisciplinary Palliative Care.American Journal of Hospice & Palliative Medicine 35 (3): 505–10. doi:10.1177/1049909117723860.

[11] Kozlov, Elissa, Bahar Niknejad, and M. C. Reid. 2018. “Palliative Care Gaps in Providing Psychological Treatment: A Review of the Current State of Research in Multidisciplinary Palliative Care.” American Journal of Hospice & Palliative Medicine 35 (3): 505–10. doi:10.1177/1049909117723860.

[12] Connor, Stehen R. “Global Atlas of Palliative Care at the End of Life.” World Palliative Care Alliance. 2014. https://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf.

[13] Raphael, Carol, Joann Ahrens, and Nicole Fowler. “Financing End-of-life Care in the USA.” NCBI. 2001. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1282187/.

[14] Lynch, T., S. Connor, D. Clark, Mj Seya, SFAM Gelders, OU Achara, and B. Milani. “Palliative Care.” World Health Organization. February 19, 2018. https://www.who.int/news-room/fact-sheets/detail/palliative-care

[15] Kumar, Suresh. 2018. “Palliative care and hospice outside of the United States.” UpToDate. https://www.uptodate.com/contents/palliative-care-and-hospice-outside-of-the-united-states.

[16] Zheng Jie Marc Ho. “Chinese Familial Tradition and Western Influence: A Case Study in Singapore on Decision Making at the End of Life.” JPSM Journal. December 2010. https://www.jpsmjournal.com/article/S0885-3924(10)00627-5/fulltext

[17] Cheng, Hon-Wai Benjamin. “Bringing Palliative Care into Geriatrics in a Chinese Culture Society—Results of a Collaborative Model between Palliative Medicine and Geriatrics Unit in Hong Kong.” Wiley Online Library. April 2014. https://onlinelibrary-wiley-com.libproxy.lib.unc.edu/doi/full/10.1111/jgs.12760.

[18] Zheng Jie Marc Ho. “Chinese Familial Tradition and Western Influence: A Case Study in Singapore on Decision Making at the End of Life.” JPSM Journal. December 2010. https://www.jpsmjournal.com/article/S0885-3924(10)00627-5/fulltext

[19] De Lima, Liliana. “Pain Relief and Palliative Care Programs: The WHO and IAHPC Approach in Developing Countries.” Pain Practice 3, no. 1 (April 15, 2003).

 

Miyah Lockhart

Sarah Rhyne

Kailan Skinner

The Differences Between Hospice and Palliative Care

Hospice and palliative care are both medical practices designed to care for and assist patients living with serious illnesses. While they both are considered similar in certain aspects, the two have different indications and goals and are often provided in different settings[1]. By definition, hospice care is considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury. It involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Hospice focuses on caring, not curing and in most cases care is provided in the patient’s home setting[2]. On the other hand, by definition, palliative care is specialized medical care for people living with a serious illness. This type of care is focused on relief from the symptoms and stress of a serious illness. The goal of palliative care is to improve quality of life for both the patient and the family. It is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support[3]. Palliative care is most often received in the home, apartment, or during a short-term hospital admission[4].

The term “hospice” can be traced back to medieval times when it referred to a place of shelter and rest for weary or ill travelers on a long journey. The name was first applied to specialized care for dying patients by physician Dame Cicely Saunders, who began her work with the terminally ill in 1948 and went on to create St. Christopher’s Hospice, the first modern hospice in a residential suburb of London. Saunders introduced the idea of specialized care for the dying to the United States during a 1963 visit with Yale University. She gave a lecture that launched a chain of events, which resulted in the development of hospice care as we know it today[2].

Dame Cicely Saunders

On the other hand, palliative care was prompted by Dr. Balfour Mount when he opened the first acute inpatient palliative care unit in Royal Victoria Hospital in Montreal, Quebec in 1976 because of the neglect of dying patients in the acute care setting. His purpose was to provide a crisis-intervention service for patients who were actively dying, and this continues to be the main reason for consulting palliative care services in the hospital. Since the 1970s, palliative care has evolved and is now used in a variety of situations: a life-limiting illness in a patient who is not terminally ill or who has symptoms but with the potential to recover, and a chronic illness such as heart failure or chronic obstructive pulmonary disease in a patient who is on disease-modifying therapy but has symptoms and will eventually succumb to illness, but is expected to live longer than someone with advanced cancer[1].

Dr. Balfour Mount

In terms of payment methods, hospice care is paid for in full by the Medicare Hospice Benefit and by Medicaid Hospice Benefit. Most insurances and the Veteran’s Administration also cover hospice services in full or with minimal co-pays. The Center for Hospice Care is committed to providing hospice and palliative care to anyone in the community who needs it and meets the qualifications, even if they are uninsured, underinsured or unable to pay. On the other hand, palliative care is paid for by Medicare, Medicaid and most private insurances if the patient meets criteria[4].

Inpatient palliative care units are often mistaken for hospices[1]. Hospice and palliative care often appear together in titles of reports in literature, but they are not the same thing. As mentioned previously, palliative is specialized care for patients living with a serious illness. Hospice care is service funded and capitated under Medicare part A and is largely provided as an outpatient home care for those deemed terminally ill[1].

There are no major cultural differences between the two practices, since they share many similarities. Existing research shows patients who are involved in hospice and palliative care are often more active in maintaining their personal relationships and are more in touch with their emotional and spiritual growth[5]. Both practices emphasize their workers being aware of the religious and cultural influences in their patients’ lives and be aware of cultural diversity in end-of-life care practices in order to best support their client and provide culturally sensitive care[5]. As mentioned previously, this does fall more on hospice care, since it is more centered around caring for people at the end of their life.

However, there is room for both hospice and palliative to grow in terms of cultural competency. It has been widely reported that ethnic minorities underutilize not only health care services in general but hospice and palliative care services specifically. This is due to a number of reasons including a lack of awareness of hospices services, language barriers, ethnocentrism, prejudice, racism and discrimination, lack of insurance coverage, mistrusting or suspicious of health care providers, and lack of cultural and linguistic competence among health care providers. While hospices and long-term care facilities are known to manage pain relief, alleviate caregiver burdens, and improve the quality of life during the last stages of life, ethnic minorities continue to be underserved by hospices. This underutilization of hospice services by ethnic minorities can lead to undertreatment, inadequate treatment or even worse outcomes[6]. The best way to solve this issue is for volunteers to receive more cultural competency training. This can be done in a variety of ways, such as first-hand experience, receiving various pamphlets and handouts with usual information and reminders, and hearing from community minority leaders[6].

In the United States, there are still discrepancies between what constitutes hospice and palliative care, which is reflected in the U.S. healthcare system. Hospice care is more established because of the clear definition of care: it can only be prescribed if the patient is expected to live no longer than 6 months[7]. While most types of hospice care are provided by Medicare and most private insurance companies, palliative care is not as widely covered. For example, most insurance companies only provide pain management coverage but might not provide social work, religious and mental health services. This provides a dilemma for both patients seeking palliative care and health care professionals prescribing different types of care. Palliative care is usually prescribed by a team of professionals from various fields that can help decide which aspects of treatment need to be focused on[8]. This can become a problem if the insurance provider does not cover certain aspects of the prescribed treatments, which can lead to changes in prescribing treatment plans. The differences between the multitude of insurance plans that one can have led to problems with prescribing palliative care for all patients with debilitating illnesses[7].

The transition between palliative and hospice care also leads to some ethical questions. In order for one to enroll in hospice care, there has to be a cease of all curative treatments. This differs from palliative care, which can begin as early as when the diagnosis is received. This provides a difficult decision for the patient, their family, and health care providers to determine whether or not the illness has become too advanced for any curative treatments to potentially work. This brings in the ethical principles of beneficence and nonmaleficence, which state that the proposed solution must have the most benefits for the patients and least risk of harm[9]. It is up to the patient and their loved ones to decide what is best for the patient, and this raises a dilemma of whether or not there is reason to cease all curative care. Stopping curative treatments can be considered by health care providers as being the best option for the patient as there is no point to continue treatment and managing symptoms would result in the best patient outcome. However, the patient and family members could still want to continue care in the hopes that there will be a turnaround in health. This leads to a dissonance between professionals and loved ones that might need to be resolved with legal help[9]. Palliative care is much broader, so care can be administered in the hospital or at home depending on what the patient needs[7]. There is also a question of costs and time commitments as well as finding resources to either move to a hospice facility or begin hospice care at home. Patients and families also have to come to terms with the shift in focus from treating the illness to managing the symptoms. To many who have not considered palliative or hospice care, this seems to be a contradiction with the principle of medicine, which is to treat and cure[9].

One of the biggest challenges that healthcare professionals face when providing palliative or hospice care is balancing the amount of personal investment that they give into the patient and maintaining some neutrality with regards to the patient. In an article that discusses the role of the primary care provider in pediatric palliative care, the authors mention a case of a 10-year-old girl who was diagnosed with terminal cancer. The patient’s family became very close with the hospital staff to the point where they considered the staff a second family. When the patient passed, several staff members came to speak at the funeral and provided condolences. However, that communication ended abruptly and the family of the deceased patient expressed their sadness and disappointment that the hospital staff did not continue to reach out[10]. This brings into question the capacity that healthcare professionals have to provide support for a family. It is unfair to ask every health care professional to extend the same courtesy of attending a patient’s funeral or checking up with a patient’s family because it would hinder those professionals from providing quality care to other patients. This ties in with the ethical principle of utilitarianism, which states that the best solution is one that yields the best results for the greatest amount of people[9]. If health care providers were to give all their patients the same amount of compassion and attention throughout their time, then that would not result with most people benefitting. However, this does not mean that health care providers should solely focus on the patient’s diagnosis. Involving the patient and family on a deeper level allows for the relationship between the patient and the care to grow, which can lead to better patient outcomes. It is up to the health care provider to find a balance between apathy and overinvestment so that the patient and their family can feel comfortable through a difficult transition in their lives[11]. One of the ways that health care providers can accomplish this delicate balance is by enlisting a team of professionals that can collectively work to benefit patients. These teams usually have individuals who are doctors, nurses, social workers, psychologists and other professions; they work together to decide what types of treatments are necessary and recommended for the patient[10].

Palliative Care Spectrum

Given the challenge presented to medical professionals and volunteers in hospice and palliative care, high levels of stress and burnout are associated with these positions because of the patient-centered nature of this kind of healthcare. Various studies have examined the resiliency of people working in hospice and palliative facilities. In one particular study, ten palliative care nurses were thoroughly interviewed, as they were asked several different questions about the nature of their work and why they chose this particular career path for themselves[12]. The researchers expected to obtain results pointing to mounting psychological stress due to the incredible amount of death and suffering the nurses bear witness to[13]. However, after analyzing the data for common themes in the rhetoric of the nurses during their interviews, the researchers found ten distinct commonalities between the subjects as to why they continue to work as a palliative care nurse. Overall, the nurses exhibited such resiliency to psychological stress due to their work because of two distinct personality traits: “hardiness and a sense of coherence”[13]. According to the researchers, “Hardiness comprises three closely related dispositional tendencies; commitment, control and challenge…Sense of coherence is an integrated perception of one’s life as being comprehensible, manageable and meaningful”[13].

Though all of the nurses interviewed shared the common theme that their past experiences influence their caregiving, there were some differences among the group[12]. The most distinguishing difference between the nurses and how they remained resilient to the tragedies they face in the workplace was how they viewed change. In the study, change was defined as:

 

“Something occurring within a work context characterized by change, whether that be individual patient care, where there may be uncertainty around life and death, or national policy, where new agendas for supportive and palliative care are being introduced and implemented”

 

For example, the nurses who embraced the changes they faced as an opportunity for improvement in the loss of their patients exhibited more hardiness and zealousness in their caretaking style. The nurses who did not particularly enjoy changes in their workplace had a higher sense of coherence, and therefore needed stability to remain resilient[13].

Given the patient-centered nature of hospice and palliative care, the patients receiving care face many challenges when entering end of life care. Hospice and palliative care can act as a major stressor for dying patients and their families, given the various stigmas surrounding the two forms of end of life care[14]. Patients and their families who choose to enter hospice and palliative care are faced with a multitude of options as to what path they should take regarding end of life care. One study examines the way 191 hospice and palliative care patients perceive the different settings in which they can receive end-of-life healthcare. The vast majority of the patients who completed the questionnaire were white, with ages ranging from 41-94 years of age, with roughly half of the respondents being male and the other half being female. Given the demographics of the study, this reflects the lack of minority present in hospice and palliative care facilities. The four different settings examined were inpatient palliative care, hospice day-care, palliative units in nursing homes, and hospice home care. The study found that patients perceived inpatient palliative care units as providing the best possible end of life care. Patients ranked this form of end of life care best in providing a safe and cooperative for both the patient and their families, as well as having the most respectful and empathetic interactions with palliative care staff in the inpatient center[15].

The major differences among the four types of palliative care examined in this study were based upon how quickly the patient’s needs were met, how comfortable the patient felt with the staff in the facility, and the overall atmosphere of the care they received. Inpatient palliative care scored the highest across the board, with p-values of 0.026, 0.004, and <0.001, respectively[16]. This shows that when quantified, the statistical significance of each category based on the setting in which palliative and hospice care takes place can greatly influence how the patient perceives the care they are receiving. The data also suggests that patients who receive palliative care versus hospice care scored each category so high because palliative care offers a much wider range of care options, while also keeping the patient at the center of their care plan.

Both patient perception of care and the resilience of hospice and palliative care nurses can greatly impact the overall experience patients have when receiving end of life care. The study examining patient perceptions of the care they received in various hospice and palliative care settings very briefly showed the differences between hospice and palliative care. The results of the study showed that inpatient palliative care was preferred by most patients, and this can most likely be attributed to the fact that palliative care covers a much broader spectrum of care than hospice does. The second study examining the resiliency of hospice and palliative care nurses did not differentiate between the two types of end of life care.

Examining the differences between hospice and palliative care through a cultural, ethical and scientific perspective can provide insight into how medicine is ultimately focused on improving patients’ quality of life. Although the differences between the two types of care are not as clear with regards to treatment for the patient and the resiliency of medical staff, there are major discrepancies in the way that hospice and palliative care are covered by insurance as well as how these two types of care impact patient outcomes and satisfaction. Recently, hospice and palliative care have become more widespread, which brings awareness to the importance of a holistic treatment plan. However, minorities remain largely underrepresented in receiving hospice and palliative care, raising many questions about the shortcomings of the healthcare system and end-of-life care. Hospice and palliative care have greatly contributed to the medicalization of death around the world and new methods of end-of-life care continue to arise, putting the patient first and maintaining quality of life at the end of life.

Annie Booz

Anurupa Banerjee

Shannon Cusick

 

[1] M. P. Davis, T. Gutgsell, and P. Gamier. “What Is the Difference between Palliative Care and Hospice Care?” Cleveland Clinic Journal of Medicine 82, no. 9 (September 2015): 569-71. Accessed April 07, 2019. https://www.mdedge.com/ccjm/article/102037/geriatrics/what-difference-between-palliative-care-and-hospice-care

[2] “Hospice Care.” National Hospice and Palliative Care Organization. (February 20, 2019). Accessed April 07, 2019. https://www.nhpco.org/about/hospice-care.

[3] “What Is Palliative Care?” Get Palliative Care. (February 21, 2019). Accessed April 07, 2019. https://getpalliativecare.org/whatis/.

[4] “Know the Difference.” Know the Difference, Hospice vs. Palliative Care › Center for Hospice Care Southeast Connecticut. Accessed April 07, 2019. https://www.hospicesect.org/hospice-and-palliative-care.

[5] Andrea S. Hanson, n.d. “How Hospice Social Workers Make Sense of Religious and Cultural Diversity as It Relates to Death and Dying.” MSW Clinical Research Paper. Accessed April 7, 2019. https://sophia.stkate.edu/cgi/viewcontent.cgi?article=1458&context=msw_papers.

[6] Maja Jovanovic. “Improving Cultural Competency Among Hospice and Palliative Care Volunteers.” American Journal of Hospice and Palliative Medicine® 29, no. 4 (July 04, 2011): 268-78. Accessed April 7, 2019. https://journals.sagepub.com/doi/full/10.1177/1049909111414863?utm_source=summon&utm_medium=discovery-provider&

[7] Michael Ollove, “Why Some Patients Aren’t Getting Palliative Care,” PEW Trusts, July 10, 2017, https://www.pewtrusts.org/en/research-and-analysis/blogs/stateline/2017/07/10/why-some-patients-arent-getting-palliative-care

[8] Robert C. Macauley, “Ethics in Palliative Care: A Complete Guide,” Oxford Medicine Online, April 2018, http://vb3lk7eb4t.search.serialssolutions.com.libproxy.lib.unc.edu/?ctx_ver=Z39.88-2004&ctx_enc=info%3Aofi%2Fenc%3AUTF-8&rfr_id=info%3Asid%2Fsummon.serialssolutions.com&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Abook&rft.genre=book&rft.title=Ethics+in+Palliative+Care+%3A+A+Complete+Guide&rft.au=Macauley%2C+Robert+C&rft.date=2018-03-01&rft.pub=Oxford+University+Press+USA+-+OSO&rft.isbn=9780199313945&rft.externalDocID=EBC5313289

[9] Nessa Coyle, “Palliative Care, Hospice Care, and Bioethics: A Natural Fit,” Journal of Hospice & Palliative Nursing 16, no. 1 (February 2014): 6, https://oce.ovid.com/article/00129191-201402000-00003/HTML

[10] Barbara L. Jones, Nancy Contro, and Kendra D. Koch, “The Duty of the Physician to Care for the Family in Pediatric Palliative Care: Context, Communication, and Caring,” American Academy of Pediatrics, 8th ser., 133, no. S (February 2014): , https://pediatrics.aappublications.org/content/pediatrics/133/Supplement_1/S8.full.pdf.

[11] Noreen M. Aziz, Jeri L. Miller, and J. Randall Curtis, “Palliative and End-of-life Care Research: Embracing New Opportunities,” Nursing Outlook 60, no. 6 (November 2012):, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3499046/

[12] Stephen Claxton-Oldfield, and Julie Claxton-Oldfield. “Should I Stay or Should I Go: A Study of Hospice Palliative Care Volunteer Satisfaction and Retention.” American Journal of Hospice and Palliative Medicine. https://journals.sagepub.com/doi/full/10.1177/1049909111432622?utm_source=summon&utm_medium=discovery-provider

[13] Janice R. Ablett. 2006. Resilience and Well-Being in Palliative Care Staff: A Qualitative Study of Hospice Nurses’ Experience of Work. Liverpool, United Kingdom: John Wiley & Sons, Ltd. https://onlinelibrary.wiley.com/doi/epdf/10.1002/pon.1130.

[14] ML Vachon. 2012. Staff Stress in Hospice/Palliative Care: A Review. PubMed. https://www.ncbi.nlm.nih.gov/pubmed/7541687.

[15] Irene J. Sandsdalen, 2003. Is There Evidence That Palliative Care Teams Alter End-of-Life Experiences of Patients and Their Caregivers>. Journal of Pain and Symptom Management. https://www.sciencedirect.com/science/article/pii/S0885392402005997.

[16] Tuva, Sandsdalen. 2016. Patients’ Perceptions of Palliative Care Quality in Hospice Inpatient Care, Hospice Day Care, Palliative Units in Nursing Homes, and Home Care. United States: BMC Palliative Care. http://vb3lk7eb4t.search.serialssolutions.com/?ctx_ver=Z39.88-2004&ctx_enc=info%3Aofi%2Fenc%3AUTF-8&rfr_id=info%3Asid%2Fsummon.serialssolutions.com&rft_val_fmt=info%3Aofi%2Ffmt%3Akev%3Amtx%3Ajournal&rft.genre=article&rft.atitle=Patients%27+perceptions+of+palliative+care+quality+in+hospice+inpatient+care%2C+hospice+day+care%2C+palliative+units+in+nursing+homes%2C+and+home+care&rft.jtitle=BMC+Palliative+Care&rft.au=Sandsdalen%2C+Tuva&rft.au=Grøndahl%2C+Vigdis+Abrahamsen&rft.au=Hov%2C+Reidun&rft.au=Høye%2C+Sevald&rft.date=2016&rft.issn=1472-684X&rft.eissn=1472-684X&rft.volume=15&rft.issue=1&rft.externalDocID=oai_DiVA_org_kau_46164&paramdict=en-US.

 

 

 

 

 

 

 

 

 

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