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

6 Comments

  1. Considering my group wrote the other post in this section about Hospice and Palliative Care, I found it fascinating to read this post since it was different from ours. I liked how you all decided to focus on the cross-culture views of these two practices, since my group and I just chose to focus on the differences between hospice and palliative care. Before reading this post, I had never really thought about how someone’s cultural and religious beliefs could effect whether or not they choose to receive hospice or palliative care. I always thought of that being more focused on physician-assisted suicide and matters like that. I wonder if anyone in the U.S. has faced a similar situation to Mr. C.

  2. Brianna Ramgeet

    April 22, 2019 at 8:39 pm

    My group did our research on how physician assisted death affects doctors, and you brought up a similar point to us. You brought up how doctors might have go against what the family wants in order to do the right thing for the patient, as did we. Concerning physician assisted death, you have to disregard the family’s want to keep the patient alive and cater to what the patient wants instead. I do have the question though that if opioids weren’t an option for pain management, would CBD products be introduced or have they been used in an opioids place? Has there been any data collected about the use of CBD for pain management in palliative and hospice care?

  3. This is a great analysis of how hospice and palliative care programs differ in cultures around the world. My group focused on the general differences between hospice and palliative care in the United States, so it was interesting to learn about how these two programs are practiced in Asian cultures. One similarity between our posts was that we both focused on the cost of hospice and palliative care, and how medical insurance does not sufficiently cover these programs, making them less available to people from a poorer socioeconomic background. One question I have from you post is: why are doctors in Asian cultures allowed to refrain from giving the most accurate diagnosis possible for the patient and their family? It seems as though this would be extremely unethical, but what differences in Asian medicine make this practice valid?

  4. Considering this article takes into account various cultures and their view on hospice care, I feel it would be beneficial if I provide my cultural perspective on this issue. I was born in the Unites States but my parents were born in a traditional home in India. They hold a strong opposing view of hospice institutions and hospice care as they believe caring for them at the end of their lives should be a responsibility of their children. I too agree with this stance but understand how life has changed and working class people sometimes do not have the ability to put their lives on pause and properly care for an individual when he/she is dying. I believe, if possible children should look after parents, who at one point looked after them when they were children and couldn’t survive without help. A question that comes up is the costs surrounding hospice care. Should there be governmental assistance for individuals who need hospice care? Because it is the lower class working people that probably need it the most and cannot afford it. Also, how do hospice officials ensure that patients are enjoying the end of their lives when the very institution they are placed in is because of their inevitable death? I feel the lack of intimacy in these institutions are depressing for individuals and family members should take this into account before putting their loved ones in a hospice center. Nobody can provide the sense of intimacy that a family member can, no matter how good they are at their job.

  5. I thought is topic was extremely interesting as it explores hospice care in Asia. I found it particularly intriguing that Confucianism plays a role in the end of life process for those who follow those teachings. In America we are very focused on having a painless death while Confucianism focuses on embracing the feeling and being in pain. the combination of Western and Asian medicine and ethics to treat Mr. C shows a current shift to patient focus, and highlights the appeal of a patient centers hospice care center. With hospice being shown to increase longevity as well as keeping the sick comfortable I am disappointed to fin out that most insurance does not cover the needs of those who may be in hospice for prolonged periods.

  6. This post was interesting for me to read because I had a negative view of Hospice care coming into the class. Growing up, people knew that you went to Hospice “to die”, and I watched a couple of my family members spend their final days under the care of Hospice nurses. While they got to spend their final days at home, it was almost as if they had no awareness of their existence due to the level of pain medication given. My top wishes for the end of my life are having an awareness and retaining my sense of humor, so that is why I struggle with accepting Hospice care. I like how this article mentions the financial challenges to this care also, as many families struggle with the costs of in-home care.

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