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Palliative care is a term not unheard of. Bringing exposure to these two words are mainstream media such as television, or more conventional mediums in the form of written language in books and newspapers. Palliative care refers to helping those with chronic illnesses — usually nearing the end of their lifespan — live out their last days with dignity and improving their quality of life. It is when a group of people within the professional field work together to provide a comfortable space for patients to relax and to allow them room to come to terms with their conditions.
Essentially, respecting their dignity as part of the caring process is something that needs to be observed and maintained. This paper will explore the methods in which dignity — be it on the patients’ or caregivers part — is upheld throughout the process of delivering the patient’s care. It will look into the various existing studies that links dignity and the meaning it carries to patients, caregivers, relatives, and for the patients who require palliative care. The next few sections will provide a brief overview of the topic and existing research, followed by the relevance of the topic in Singapore, how it affects the quality of palliative care offered and finally, the solutions for any challenges faced.
The sense of personal dignity is something that we all have through each point in our lives. During transition into adolescence, dignity is mainly championed by our parents as they are responsible for us and we are dependent upon them. However, once we get older, our dignity becomes something we can control ourselves, that is, until we get older and senile. When approaching the end-of-life age, there are some other setbacks in the likes of serious illnesses that can impair a person’s dignity and essentially cause pain, despair and frustration to the patient and their family (Hospice Education, 2017). Palliative care aims to help both parties survive this period and end their lives in the best way possible.
Respecting their dignity involves making an effort to address the patients’ needs and wishes. Dignity is the lifelong need that is vital to any person’s welfare and their sense of worth and respect. With the loss of control over their dignity, it is imperative that hospices know how to take care of a patient without making them feel like their dignity is lost.
There are some key aspects of palliative care and respecting dignity that needs to be considered (Samaritan, 2015). For example, respect. This includes the mutual respect between people and the respect for privacy as well. It is the way that caregivers deal with the patients that matters in this context. Next, autonomy. This refers to the power to choose what the patient wants. Ergo, being able to be independent – something that is a struggle for many people of that age. Adding on, empowerment, which comprises of traits such as self-esteem, self-pride and modesty. The patient needs to be able to feel dignified and stand firm and strong despite their condition. Last but not least, communication, that in which is being able to understand information, both verbally and non-verbally, is something that they struggle with. They feel the need to be understood, and rightly so.
Dignity is important in palliative care setting as it is a form of respect towards patients and it gives them a say in decision making even when they are nearing end of life. The question of how their dignity is preserved can be answered through a number of ways, citing: physical needs, emotional needs, spiritual needs, social needs and family needs. Each of these can be controlled by their families and other caregivers that can help maintain their dignity at the end-of-life stage (WHO, 2018).
- Emotional needs. To preserve their dignity, it is important to communicate with patients, listen to them and to sympathize with their feelings. It is also important to involve them in important decision-making so that they have a say in choosing and receiving the care they want and need.
- Physical needs. This is the controlling and regulating of the patients’ pain and other symptoms like nausea and shortness of breath. The hospice caregiver needs to ensure that the patient is in the right environment to get dignified care.
- Spiritual needs. For many people approaching the end of their life, spirituality is important, whether they are religious or not. This is characterised by them wanting to spend time with you in order to understand their life, identity and calling.
- Social needs. This can promote dignity and can be done simply via activities like allowing a patient to control their finances and doing activities that make them feel happy.
- Family needs. The caregivers are often trained to take the family’s needs into account as well. This will help maintain the dignity of the family during the illness and after death by providing social and emotional support.
Over the years, younger generations have been depending on palliative care to take care of their parents in hospices and old nursing homes on behalf of themselves. In Singapore, even as an individual is placed in palliative care, dignity is widely regarded as a crucial aspect. A study was conducted in Singapore to explore how dignity is demonstrated in palliative care. Through qualitative interviews with advanced cancer patients, it was determined that their experience of dignity was dependent upon three factors: social, organizational, spiritual. The study determined that apart from needing support from their friends and family, they also needed a good healthcare system, welfare organization and private sector support, as well as being able to observe the existing cultural and religious belief systems (Lee, Ow, Akhileswaran, & Goh, 2013). All the aforementioned are what helps to uphold a patients’ sense of dignity throughout their hospice stay.
There are many influencing factors that determines the importance of dignity whilst providing palliative care. Two key factors which can influence how well dignity is preserved at the end of life stage includes promoting self-respect and correspondingly, treating the patient with respect. These are both aspects that can be translated into the palliative care process. In most cases, the focus of palliative care is on prolonging life and symptom control rather than on wholesome and holistic care. As such, it would be beneficial for the hospice or caregiver to consider physical, emotional and spiritual needs of the patient throughout the palliative care process (Kennedy, 2016).
A study was conducted with 20 patients who were admitted to coronary care units and out of them, 5 were selected for purposeful sampling to participate in semi-structured in-depth interviews. They used qualitative data analysis methods and determined that in most cases, the degree of care results from the human environment and the physical environment. Therefore, the holistic care process has to include being able to meet the needs of the patients, both in the hospital and after discharge. These were the key themes that emerged in the study, along with the need for patients to have a sense of security and a good, effective relationship between the patient and the nurse (Borhani, Abbaszadeh, & Rabori, 2016).
Locally, there are programmes that are already in place to assist patients and their loved ones that are receiving palliative care. One programme implemented is the Temasek Cares- Programme Dignity, a pilot palliative home-care programme for advanced dementia patients. It has helped family members anticipate changes in care and providing solutions on how to alleviate significant distress of the patient. For example, using therapeutic touch to calm the patient down when they are agitated. Also, placing things that the patient likes around him/her can help to reassure them and reduce distress. This has enabled the caregivers to better manage patients.
On a global context, a study conducted by Rome et. al. of which its main goal was relieving the suffering of patients and their families by the comprehensive assessment and treatment of physical, psychosocial, and spiritual symptoms experienced by patients. These are some factors that tends to be neglected when taking care of patient’s nearing the end of life; therefore something Singapore can take into consideration when implementing palliative care.
The main challenges that are faced in providing palliative care includes the development of a national policy or a specific regulatory framework, of which includes resource allocation, culture building, collaborative policy making and interdisciplinary teamwork. By having a national policy, it caters to a widespread of needy people.
For instance, in Singapore, Government subsidy is available through means-testing. The level of subsidy is mainly determined by the household monthly income per person. In addition, Medisave can also be used for palliative care services. With the help of the policy, it has made healthcare cost much more affordable.
Another challenge is the training needed for workers and also public education. In Singapore, it has only been recently that people have started to understand how to deal with people approaching end-of-life. There needs to be professionals who understand what palliative care is about, and more crucially, possess the necessary training to carry it out. This is also something that is obligatory for the policy makers, health professionals and the family as a whole. Those involved needs to be informed of the way they can impact the palliative care system in Singapore using the existing systems or more (Lucas, 2013).
Another challenge that exists when ensuring that the patients’ dignity is being respected is the pain control factor. For diseases like cancer that can get extremely painstaking and unpleasant for patients, it is significant that it is identified as a primary symptom as well. Managing and maintaining dignity then, would be through providing pain relief that is available to all people.
With specific reference to Singapore, many reports indicate that the country officials have taken steps to ensure that palliative care is more available to people. Their new policy ensures that patients do not have to go for the most expensive options and that they can afford the palliative care at any price point. The country has decided to provide continuous residential services in the Healthcare Services Bill that would be able to regulate with more clarity the continuity of care to the patients and generally address the wider issue of quality care for palliative care (Rashith, 2018).
Some key solutions for the challenges stated earlier can be having more family centered care, which includes workshops for the families on how to deal with their relatives who are suffering with various diseases at the last stages of their lives (Ho, Luk, chan, & Ng, 2015). This goes hand in hand with the collective idea that highlights the importance that compassion plays in preserving the dignity of patients in Singapore and other areas.
In order to evaluate the effectiveness of the proposed strategies, I would recommend conducting a questionnaire to be sent to the family members of the patients to evaluate whether the workshop has been helpful in guiding them on coping with the fact that their loved ones are nearing the end stage of life. Questions asked in the questionnaire may include enquiring whether the workshop has been able to allow them to communicate better with their loved ones, and if not, how else they can improve; how much the workshop has taught them to recognise symptoms and curb the pain. Feedback would be collected after a one-month trial to evaluate whether the workshop’s tips are helpful, and if it isn’t, the strategies will be re-evaluated and necessary changes will be made.
Palliative care and the issue of dignity is something that needs to be considered with utmost importance. As per the research conducted, both in Singapore and in other countries, the feeling of dignity is universal. Patients approaching end-of-life wants to feel valued, dignified and loved. Despite the many challenges, there is a breakthrough in the sense that there have already been many measures put in place to improve the state of palliative care whilst respecting and upholding dignity as well. Some solutions have included training opportunities for caregivers to learn how to treat palliative care patients better, and to improve family relations. Patients need to feel respected and heard, and not treated as though they are dying, with no respect for their wishes. All these factors in providing a warm and comfortable environment for patients to live out their days in peace, with respect and dignity.
References
- Borhani, F., Abbaszadeh, A., & Rabori, R. (2016). Facilitators and Threats to the Patient Dignity in Hospitalized Patients with Heart Diseases: A Qualitative Study. International Journal of Community Based nursing and Midwifery, 36-46.
- Chochinov, H. (2002). Dignity-Conserving Care—A New Model for Palliative Care. Perspectives on Care at the Close of Life.
- Enes, S. (2003). An exploration of dignity in palliative care. Palliative Medicine.
- Ho, A., Luk, J., chan, F., & Ng, W. (2015). Dignified Palliative Long-Term Ca. American Journal of Hospice and Palliative Medicine.
- Hospice Education. (2017). Seven Ways to Maintain Patient Dignity at End of Life. Cross Road Hospice.
- Kennedy, G. (2016). The Importance of Patient Dignity in Care at the End of Life. Ulster Medical Society, 45-48.
- Lee, G., Ow, R., Akhileswaran, R., & Goh, c. (2013). Exploring the experience of dignified palliative care in patients with advanced cancer and families: A feasibility study in Singapore. Progress in Palliative Care, 131-139.
- Lucas, S. (2013). Palliative Care: Issues and Challenges. WHO.
- Rashith, R. (2018). Singapore’s move to ensure palliative care isn’t disrupted for patients is financially sound: American expert. Singapore: Straits Times.
- Rome, Robin B, et al. “The Role of Palliative Care at the End of Life.” The Ochsner Journal, The Academic Division of Ochsner Clinic Foundation, 2011, www.ncbi.nlm.nih.gov/pmc/articles/PMC3241069/
- Samaritan. (2015). Defining Dignity in End-of-Life with Hospice Care. Samaritan NJ.
- The Care Journal : Dying with Dignity. (n.d.). Retrieved from https://www.temasekfoundation-cares.org.sg/journal/6/dying-with-dignity.
- WHO. (2018). Palliative Care.
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