Why Palliative Care is Bad

Understanding Palliative Care

Palliative care, focused on providing relief from symptoms and stress in serious illnesses, also has its share of challenges and ethical considerations. These aspects often lead to misconceptions about why palliative care might be viewed negatively.

Barriers to Palliative Care Research

Research plays a crucial role in improving palliative care practices. However, several barriers hinder the expansion and improvement of palliative care research. These include a lack of funding, limited institutional capacity, a shortage in the researcher workforce, and challenges related to the topic and population. For instance, the high attrition rates and heightened human subjects protections pose significant challenges. Moreover, there's a public and professional misunderstanding of palliative care, and an aversion to topics related to serious illness and end-of-life NCBI.

These barriers often lead to a lack of critical data, which in turn, impacts the development and refinement of palliative care practices.

Ethical Principles in Palliative Care

For effective practice of palliative care, physicians and nurses need a comprehensive understanding of ethical principles and precedents NCBI. Medical ethics, a field of applied ethics, is intended to provide guidelines and codes for physicians regarding their duty, responsibility, and conduct in palliative care NCBI.

The foundation of medical ethics in palliative care is supported by six values: autonomy, beneficence, non-maleficence, justice, dignity, and truthfulness and honesty NCBI.

Palliative care should also focus on effective communication, including explaining the concept of a good death and resolving conflicting needs of the patient and family NCBI.

By understanding these ethical principles and barriers, we can work towards improving palliative care and breaking down the stigma associated with it. This information is vital in informing the conversation on the challenges and downsides of palliative care.

Core Aspects of Palliative Care

Palliative care, despite its potential drawbacks, is an essential component of healthcare, particularly for the elderly. However, understanding its core aspects including values in medical ethics, communication, and pain management, is crucial to improving its effectiveness.

Values in Medical Ethics

Medical ethics forms the backbone of effective palliative care. Physicians and nurses need a solid understanding of ethical principles and precedents to practice palliative care effectively [1].

The foundation of medical ethics in palliative care lies in six fundamental values: autonomy, beneficence, non-maleficence, justice, dignity, and truthfulness, and honesty. Each of these values plays an essential role in guiding the decision-making process, ensuring that patient welfare is prioritized, and that treatment decisions respect their autonomy and dignity [1].

Communication in Palliative Care

Clear and compassionate communication is another cornerstone of palliative care. It involves explaining the concept of a "good death" and resolving the conflicting needs of the patient and the family. This can be a challenging task, given the sensitive nature of end-of-life discussions. However, effective communication can help ensure that the patient's wishes are respected and can ease the emotional burden on the family [1].

Pain Management in Medicine

Pain management is a core ethical duty in medicine. Despite this, pain is often neglected in medical care, leading to unnecessary suffering for the patient. There is a pressing need to remove hurdles to pain relief and view pain as a public health crisis. The goal of end-of-life care is to prevent or relieve suffering as much as possible while respecting the patients' desires [2]. Therefore, it is essential to prioritize pain management in palliative care to improve patient comfort and quality of life.

These core aspects of palliative care are not without their challenges. However, recognizing these issues and taking proactive steps to address them can go a long way in improving the quality of palliative care and making it a more beneficial practice for patients, families, and healthcare providers alike.

Satisfaction in Palliative Care

Evaluating the quality of palliative care often involves assessing the level of satisfaction among patients and their families. However, studies have revealed several issues that may negatively impact their experience, shedding light on why palliative care is seen as unsatisfactory by some.

Patient vs. Family Satisfaction

Research suggests a discrepancy in the level of satisfaction between patients and their families. According to a study published by NCBI, family members were more satisfied with palliative care services compared to patients themselves. This may point to a variance in the level of care or attention provided to patients versus their families in palliative care settings.

Addressing Key Issues

In addition to this discrepancy, the same study also revealed that patients and families rated pain control, symptom control, and the effect of anxiety on the patient as significantly worse than patients' own ratings. This indicates a potential gap in meeting these crucial needs within palliative care, underscoring the importance of rectifying these issues to improve patient and family satisfaction.

Satisfaction with Hospital Care

The quality of care delivered by hospital doctors and nurses also factors into the overall satisfaction with palliative care. Only 34% of patients and 54% of family members rated hospital care as good to excellent, according to the same NCBI study. This low rating suggests a notable lack of satisfaction with hospital care within the palliative sector.

Negative comments about palliative care services were primarily related to issues such as communication, coordination of services, doctor's attitudes, delays in diagnosis, and difficulties in receiving home visits. These criticisms highlight areas of improvement needed within palliative care settings.

Thus, to enhance satisfaction levels in palliative care, it's crucial to address these problems and strive for a more holistic approach that caters to the needs of both patients and families. As the NCBI study suggests, the needs of family members may sometimes surpass those of the patients themselves, further emphasizing the necessity to view palliative care as a comprehensive service that encompasses all individuals involved.

Areas for Improvement in Palliative Care

Despite the many benefits of palliative care, there are certain aspects that require improvement. By examining the criticisms of palliative care, we can better understand the needs of patients and their families and strive for a more holistic approach to care.

Criticisms of Palliative Care

One significant criticism of palliative care is the potential discrepancy in the level of care provided to patients versus their families. Studies have shown that family members were more satisfied with palliative care services compared to patients themselves [3]. This suggests that there may be a gap in addressing the key issues faced by patients, including pain control, symptom control, and the effect of anxiety.

Further criticism revolves around hospital care within the palliative context, where hospital doctors and nurses were rated poorly. According to a study, only 34% of patients and 54% of family members rated them as good to excellent [3].

Negative feedback about palliative care services were primarily related to issues such as communication, coordination of services, doctor's attitudes, delays in diagnosis, and difficulties in receiving home visits. These criticisms highlight areas of improvement needed within palliative care settings [3].

Needs of Patients and Families

Understanding and addressing the needs of patients and their families is a key aspect of improving palliative care. In some cases, the needs of the family may surpass those of the patients themselves.

For example, some family members rated pain control, symptom control, and the effect of anxiety on the patient as significantly worse than patients' own ratings. This suggests a potential gap in addressing these key issues within palliative care [3].

In light of these findings, it's essential for palliative care services to prioritize both patient and family needs, ensuring that their concerns are heard and addressed effectively.

Holistic Care Approach

To address the criticisms of palliative care and better meet the needs of patients and families, a more holistic approach to care is required. This approach should encompass not only medical treatment but also emotional support, communication, and coordination of services.

A holistic approach to care in palliative settings focuses on the whole person, rather than just their symptoms or disease. It recognizes the interconnectedness of physical, emotional, social, and spiritual aspects of health and well-being. By addressing all these aspects, palliative care can better meet the complex needs of patients and their families [3].

In conclusion, while palliative care provides many benefits, there are areas that need improvement. By addressing these criticisms and focusing on the needs of patients and families, we can strive to provide a more holistic and effective approach to palliative care.

End-of-Life Care Principles

End-of-life care principles play a pivotal role in the palliative care process. These principles focus on the quality of life for patients nearing the end of their lifespan and are centered around goals of care, ethical decision-making, and biomedical ethics.

Goals of End-of-Life Care

The primary goal of end-of-life care for dying patients is to prevent or relieve suffering as much as possible while respecting the patients’ desires. The focus is on providing comfort and maintaining the highest possible quality of life for as long as possible. Care is provided not only to patients but also to their families, offering emotional support and guidance during a challenging time.

Ethical Decision-Making

In end-of-life care, ethical decisions may concern patients’ family members and society as well as the patients themselves. It's essential to protect the rights, dignity, and vigor of all parties involved in the clinical ethical decision-making process. Decisions are made according to the patient's advance directives (ADs) if they have been provided, and if not, decisions fall on the patient's family members.

Biomedical Ethics Principles

Five ethical principles guide healthcare professionals in the management of end-of-life care, including decisions regarding resuscitation, mechanical ventilation, artificial nutrition and hydration, terminal sedation, withholding and withdrawing treatments, euthanasia, and physician-assisted suicide. These principles include:

1. Autonomy: Respecting the patient’s self-governance and decision-making capacity.
2. Beneficence: Promoting well-being and doing what is best for the patient.
3. Nonmaleficence: Avoiding harm or injury to the patient.
4. Fidelity: Upholding trust and maintaining commitments made to the patient.
5. Justice: Treating patients fairly and equitably [2].

These principles underlying biomedical ethics in end-of-life care serve as a compass for navigating the often complex and emotionally charged scenarios that arise during the delivery of palliative care. They uphold the dignity and value of each individual, advocating for balanced, compassionate care that aligns with the patient's desires and best interests.

Challenges in Palliative Care Services

Despite the undeniable benefits of palliative care, there are significant challenges that limit its effectiveness and accessibility. These challenges include underfunding in research, the need for new initiatives, and limited access to community care.

Underfunding in Research

Palliative care research has historically received less financial support than studies focused on prevention and cure. Specifically, less than 0.3% of cancer research funding is allocated to palliative care, indicating a stark imbalance in financial allocation [4]. This lack of funding hinders the development of new practices and understanding, which could enhance the quality of palliative care for those in need.

Initiatives for Research

Recognizing the need for increased investment in palliative care research, organizations such as the National Institute for Health Research (NIHR) and the National Cancer Research Institute (NCRI) in the UK have taken steps to address this funding gap. The NIHR, for instance, has allocated £5.5 million to support palliative care research and offers resources and support to researchers.

In addition to funding, initiatives like the MORECare project aim to provide guidance on designing and conducting research in palliative care. This includes an e-learning component to support researchers in developing their methodology, thus addressing the challenge of conducting research around sensitive and complex symptoms.

Access to Community Care

Patients with palliative care needs often face challenges in accessing appropriate care, which can result in unnecessary hospital admissions. Research indicates that access to 24-hour community care can significantly reduce emergency hospital admissions. This addresses the need for patients to receive care in their preferred locations, which is often not in a hospital setting [4].

However, gaps in care provision persist, contributing to individuals receiving end-of-life care in hospitals instead of their homes. To address this, studies are ongoing to assess the impact of early referral to specialist services for patients with advanced lung cancer and the development of support tools for managing pain medications at home. These studies aim to improve outcomes across different disease areas.

While these initiatives are promising, they underline the necessity for continual improvement in palliative care services. Addressing these challenges is crucial in enhancing the quality of life for patients in need of palliative care and their families.

References

[1]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2902121/

‍[2]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7958189/

‍[3]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1663479/

‍[4]: https://spcare.bmj.com/content/6/1/2