Human Dignity, Dignified Care, and the Context of Cancer Care

Dignified care is a human right. Respect, privacy, equality, support, autonomy, independence, and community are the essential elements of dignity in the context of care. The delivery of dignified care has profound implications, such as high quality care, social and emotional well-being, healthy boundaries, and alleviation of stress. To provide dignified care, it is important to understand the meaning of respecting and violating dignity, and understanding the value of dignified care in specific contexts such as cancer.

Geography: United States; Focus Area: Dignified care and its importance in cancer care

The Definition of Dignity

Dignity in care can be defined from the perspective of human rights, which are universal and belong to every individual. Dignified care is defined under the Health and Social Care Act of 2007, Regulation 10 (SCIE, 2020). The Care Quality Commission sets out guidelines for providers for the treatment of people with dignity: ensuring that they are respected at all times, ensuring that people have privacy, treating people as equals, providing them support when they need, and ensuring they are independent, autonomous, and involved in the local community. 

Implications of Dignified Care

Dignity in providing care promotes high quality care. A person who is respected, their ambitions and capacities recognized, and acknowledged for who they are, what they can do, and the life they have lived, receives high quality care (SCIE, 2020). Relationships between the patient and carer, between patient and the community, and within groups are important. Personalization in care includes the qualities of self-esteem, independence, and dignity. 

Morgan (2021) explains about the elements of dignity in care from a general standpoint. He relates that people who approach healthcare services may feel “fragile and vulnerable”. Treating an individual with dignity ensures speedy recovery as it promotes their self-esteem and honor and does not undermine their desires and abilities. Promoting dignity means that all individuals receive equal care regardless of their ethnic, cognitive, and physical differences, and promoting privacy and confidentiality, respecting personal space and boundaries. It reduces stress, and promotes emotional and physical well-being. Providers listen attentively, use the appropriate body language, speak politely and in a friendly manner, and respect their opinions. 

Respecting and Violating Human Dignity

Promoting human dignity refers to positive behaviors such as respecting privacy, promoting communication, providing human resources and competent personnel, and supporting patients and their companions. Positive behaviors may depend on different types of patients such as elders, autistic population, breast cancer, heart disease, or terminally ill patients (Bagherian et al., 2019). Respecting dignity provides reassurance, empowerment, and comfort to the patient, promoting better functioning and management of the illness. 

Violation of human dignity pertains to multiple aspects such as withholding relevant information from patients, asking unnecessary questions, encroaching on personal issues, disrespecting the values and beliefs of the patient, or failing to curb gender inequality between staff and patients (Bagherian et al., 2019). A lack of dignity in care delivery, uncertainty, and humiliation adversely affects the process and may prolong recovery time and hospital stay. Negative feelings of fear, shock, anger, denial, discomfort, indifference, and hatred have long-term consequences on the health of patients. 

Promotion: Peaceful, Pain Free and Dignified: Palliative and End of Life Care for People on the Autism Spectrum. A Guide for Social Care Practitioners Paperback – 27 November 2015 by Jill Ferguson (Author)

   

Dignified Care in Treating Cancer

Cancer diagnosis, treatment, and rehabilitation is associated with significant psychological and physical burden (Bagherian et al., 2019). Ethical principles related to human dignity may be difficult to implement in cancer care. Care approaches mainly focus on the physical aspects of the illness, rather than addressing the spiritual, mental, and social needs of patients. Furthermore, religious and cultural factors and uncertainty about the future influence dignity in cancer patients. 

Bagherian and colleagues (2020) studied a sample of cancer patients, older than 18 years, from an internal medicine ward in Iran. Interview responses were recorded on the meaning of dignity, factors that positively and negatively affected dignity using in-depth interviews, followed by data analysis, and descriptive reporting. Results indicated three themes from the data collected, pertaining to respect for human values, personal space and privacy, and moral support. Categories were defined pertaining to the themes identified. For example, the theme “moral support” was associated with the categories gentle disclosure, empathy, and desire for hope. 

Researchers found that preserving privacy was the most important aspect of preserving dignity. Protection of privacy was related to medical confidentiality, same gender healthcare, and protection of physical space. Patients experienced issues related to irrelevant medical examinations, non-availability of separation screens, and unnecessary information disclosure (Bagherian et al., 2019). Patients were concerned about being judged, pitied, or rejected for the information they provided, and found intrusiveness and curiosity from personnel unethical. Patients preferred same gender healthcare, which caused concern due to a lack of nurses, specifically in the radiation therapy department. 

Interview responses about "Respect for human values'' revealed that preservation of their values was a major concern. Patients considered truth-telling, pity, equality, and autonomy as important aspects of care delivery (Bagherian et al., 2019). They expected professional behavior from the medical team and being fully informed of their medical condition. Patients complained of inadequate access to care - facilities and drugs in their ward. Patients preferred that the opinion they contributed pertaining to their  healthcare was fully respected and implemented. 

In the final category, i.e. “moral support”, patients indicated that empathy, desire for hope, and gentle disclosure of bad news were important aspects of promoting dignity (Bagherian et al., 2019). They indicated that an inability of the care team to accurately perceive their mental state resulted in a lack of empathy and attention. They considered not being able to understand their worries and concerns as a form of disrespect for their dignity. Patients feared uncertainty about illness and finances, and death, and indicated that understanding their financial status was a form of respecting their dignity. They indicated that disclosing a diagnosis must be accompanied by the right wording to cushion its impact, and considered this as a form of respect for their dignity. Providing hope and inspiration about the disclosure of health status was perceived as promoting dignity as patients often found themselves experiencing despair and gloom. 

Furthermore, autonomy is an important aspect of maintaining human dignity. Patient involvement in medical decision-making is a form of preserving human dignity (Bagherian et al., 2019). The involvement of family and peers empowers and motivates patients. Pity from the medical team undermined their values and compassionate care was desirable as an ethical and human value. 

In effect, loss of dignity in cancer care is a potential area that requires improvement as part of care delivery. Broadening the ethics of care enhances care quality and preserves patient dignity. Recommendations from the study are evidence-based and provide important information for the oncology team for the development of essential guidelines.  

Promotion: Dying Dignified: The Health Care Professional's Handbook Paperback – Import, 1 January 1984 by Thomas Andrew Gonda (Author), John Edward Ruark (Author)

   

Keywords

empathy, cancer care, high quality care, human rights, human dignity, positive patient outcomes, equitable care, ethics, empowerment, oncology team, dignified care, Autonomy, quality of life, physician conscience

References

Bagherian, S., Sharif, F., Zarshenas, L., Torabizadeh, C., Abbaszadeh, A., & Izadpanahi, P. (2019). Cancer patients’ perspectives on dignity in care. Nursing Ethics, 27(1), 096973301984512. https://doi.org/10.1177/0969733019845126

Morgan, A. (2021). What is dignity in care: Everything you need to know. One Education. https://www.oneeducation.org.uk/what-is-dignity-in-care/

SCIE. (2020). Defining dignity in care. Social Care Institute for Excellence (SCIE). https://www.scie.org.uk/dignity/care/defining

Patient Rights Surrounding Autonomy in Healthcare Delivery

Patient rights are part of human rights standardized across care settings, and guided by ethical principles - beneficence, autonomy, nonmaleficence, and confidentiality. Autonomy represents in different forms where ethical principles are involved. In a healthcare era which is patient centric, patient autonomy is viewed as a partnership between the patient and the provider of care. Further, patient autonomy empowers patients and serves as an opportunity to learn about a condition or procedure, and the intended care plan.

Geography: Global; Focus Area: Human rights in healthcare delivery

Olejarczyk and Young (2022) define patient rights as a subset of human rights. Human rights refer to the minimum standards that a human expects to be treated by fellow humans. Rights are guided by ethical principles to standardize care across healthcare fields. Patient rights empower them to improve health, strengthen relationships with healthcare providers, and help deal with insurance companies for matters related to health coverage.

The Correlations of Patient Autonomy with Traditional Ethical Principles

The core ethical principles that define patient rights include beneficence, autonomy, justice, nonmaleficence, inviolability of human life, and trusting relation between patient and provider. In the absence of a legal standard, care providers can prioritize ethical principles to achieve a favorable outcome for the patient (Olejarczyk & Young, 2022). Patient autonomy may coincide with other ethical principles in several ways as explained below:

• Beneficence refers to a provider doing what is best in the interest of the patient. The principle conflicts with patient autonomy, which makes it necessary to assist the patient in understanding the predictable consequences of the decision, and in the case of disagreement, the care provider is responsible for explaining reasons for recommendations to help the patient make an informed decision. 

• Autonomy empowers a patient to make healthcare decisions and defend judgements when it does not coincide with what the physician argues is beneficial. In the case when the patient refuses treatment in accordance with autonomy, the physician can still attempt to inform the patient of the consequences of acting against medical advice. A patient’s right of autonomy is violated when, in a non-emergency situation, the healthcare team or family of the patient coerce the patient to act without the patient’s permission.

• Nonmaleficence ensures that the patient will not be worse after treatment. When a treatment has unintended harm, the physician may inform the patient prior to taking risk to provide an opportunity to accept or decline risk, in which case patient autonomy may be exercised. 

• The patient-provider trust relationship entails the patient’s belief in the physician and protecting information that could be taken advantage of to harm the patient (confidentiality). Patient-provider relationship has an imbalance of power, given the higher level of skills, knowledge, and experience of the provider. The patient places faith, confidence, and reliance in the provider, however, the ideal scenario entails a deliberative relationship involving collaboration between the provider and the patient for the best healthcare outcomes. This is in contrast with the provider deciding for the patient (paternalistic - patient is passive), provider providing information to the patient without influencing the patient (informative -patient is the active decision maker), or the provider discerning patient goals and then offering options to achieve those goals (interpretive - patient is passive)

• Informed consent combines the right to be informed of potential harm to one’s body and the right to autonomy. In informed consent, patient autonomy supercedes the care provider’s desire for beneficence. A patient has the right to refusal of treatment as part of informed consent even when the provider acts out of beneficence. A patient may choose future relationships with providers or maintain health beyond the healthcare setting (care continuity) by exercising autonomy. 

Promotion: Autonomy and Clinical Medicine: Renewing the Health Professional Relation with the Patient (International Library of Ethics, Law, and the New Medicine Book 2) 2000th Edition, Kindle Edition by J. Bergsma (Author), David C. Thomasma (Author) 

   

Perspectives on Autonomy in Patient Care

Physician-Patient Partnership in the Era of Enlightened Care

Over the years, care delivery has shifted from the physician taking all decisions and the patient complying, to the patient contributing equally to decision-making in the delivery process, the latter considered as a form of “enlightened care” (Bernstein, 2018). Involving patients and helping them understand treatment options entails collaborative work to achieve health and wellness goals. Sometimes, physicians do not encourage patient involvement in the decision-making process, either by preventing them from contributing their opinion or researching their condition. Although physician expertise and high level of clinical knowledge is to be respected, it is also important to understand that patients have a level of awareness about their bodies, treatment tolerance, and preference for receiving care. Experts recommend finding the right doctor who will understand their style of receiving care and respect their preferences fully. Choosing the right doctor and participating in medical decision-making are important aspects of patient autonomy.

The Several Facets of Patient Autonomy that Empower Patients

A patient exercises the right to autonomy by learning more about a condition, performing research about alternative treatment options, discussing alternative treatment options with the care provider, preparing questions for the provider prior to the visit, getting a second opinion from a specialist, discussing tolerance for a specific treatment, and expending effort to find the right doctor for a condition (MediFind, n.d.). For example, a woman who is not satisfied with the level of care has the right to change her gynecologist. When she is not satisfied with the outcome of a surgical procedure, she has the right to request surgical notes and pursue additional consultation and differential diagnosis. These acts of exercising autonomy are likely to resolve her symptoms spontaneously.

Therefore, patient autonomy gives the patient the right to make decisions about their care without the care provider influencing their decisions. The provider can educate the patient but cannot make decisions for the patient. It does not support the act of promoting patient’s welfare when patient autonomy is compromised. 

Promotion: Advance Directives: 54 (International Library of Ethics, Law, and the New Medicine) Hardcover – 5 November 2013 by Peter Lack (Editor), Nikola Biller-Andorno (Editor), Susanne Brauer (Editor)

   

Keywords

ethical principles, patient-provider trust, differential diagnosis, informed consent, enlightened care, confidentiality, refusal of treatment, second opinion, Autonomy, empowered patient, care continuity

References

Bernstein, C. A. (2018). Take control of your health care (exert your patient autonomy). Harvard Health Blog. https://www.health.harvard.edu/blog/take-control-of-your-health-care-exert-your-patient-autonomy-2018050713784

MediFind. (n.d.). Why is Patient Autonomy Important? MediFind. https://www.medifind.com/news/post/why-is-patient-autonomy-important

Olejarczyk, J. P., & Young, M. (2022). Patient Rights and Ethics. National Library of Medicine; StatPearls Publishing. https://www.ncbi.nlm.nih.gov/books/NBK538279/

How Far Have ACOs Taken Value-Based Care, and what to Expect in the Future

Timely and appropriate patient care is the hallmark of Accountable Care Organizations (ACOs). ACOs resolve common problems in healthcare delivery including duplication of services, fragmentation among providers, and medical errors. The proliferation of ACOs has been impeded by several barriers related to lack of education and incentives and difficulty with alternative payment models (APMs). Three new ACO models proposed by the American Hospital Association will increase growth in the coming year. The eventual goal to transition towards value-based services models will have a positive impact on performance and raise the chances of steering away from fee-for-service models.

Geography: United States; Focus Area: Performance of Accountable Care Organizations (ACOs)

According to the Centers for Medicare and Medicaid Services, an Accountable Care Organization (ACO) is a group of physicians, healthcare providers, hospitals that voluntarily provides coordinated care to Medicare patients. The goals of ACOs are to ensure that the “right care at the right time” is delivered to patients, and fragmentation between providers, duplication of services and medical errors are prevented (Centers for Medicare & Medicaid Services, 2021). ACOs receive a share in the Medicare savings program by spending wisely and providing high-quality care. 

In a report by the Medicare Payment Advisory Commission, four main barriers are associated with ACO implementation, which need to be resolved for the success of the ACO movement. First, beneficiaries need to be educated about the benefits of enrolling with an ACO. Second, ACOs need incentives to manage rising Medicare Part D expenses. Third, the financial incentives of hospitals need to be aligned with those of ACOs (obtaining savings from managing drug costs and hospital care). Fourth, ACOs need to review their payment for physicians rather than continuing to rely on the fee-for-service model, and derive value from alternative payment models (APMs) (Joszt, 2020).

Furthermore, the American Hospital Association, 70,000 care providers, physicians, and hospitals will collaborate and coordinate care for 13.2 million Medicare patients through three ACO models in 2023. Hagland (2023) informs that rolling out these models will raise chances of CMS achieving its goal of all Medicare enrollees entering into ACO to access their provider services. The models proposed by CMS for ACOs are (Hagland, 2023):

• Medicare Shared Savings Program (Shared Savings Program) - largest ACO initiative introduced by ACA with 456 ACOs and 10.9 million beneficiaries in 2023. New policy related to physician fee schedule are likely to increase participation in ACOs during 2024 and the future. The policies are likely to benefit underserved and rural areas, increase beneficiaries, and promote equity.

• Accountable Care Organization Realizing Equity, Access, and Community Health (ACO REACH) Model - aims to improve care quality through care coordination and increasing access to accountable care to the underserved population and home care. In 2023, 132 ACOs have the ACO REACH model with 2.1 million beneficiaries and 131,772 providers. 824 Rural Health Centers, Federally Qualified Health Centers, and Critical Access Hospitals will participate in the ACO REACH model in 2023 to address ethnic and racial disparities.

• Kidney Care Choices (KCC) Model - includes care coordination for stage 4 and 5 kidney disease and end-stage renal disease, increasing access to kidney transplant, delaying onset of dialysis. In 2023, 55% REACH ACOs have a self-reported status as provider organizations. In 2023, the KCC model will have 130 KCC entities, 249,983 beneficiaries, and the participation of 249,983 care providers, accounting for 87% increase in organizations and providers, and 62% increase in beneficiaries when compared to 2022.

Market analysts predict the growth in ACO participation, with further increase in growth by 2024. Greater interest in high risk models such as ACO REACH points at the need for more high-risk options under the Shared Savings program (The Regulatory Review, 2022). Greater participation in Shared Savings is expected as financial risk will be reduced, financial spending will be backed by relevant policies, and investment will be paid back through shared savings. The model will have several improvements including greater oversight, equity, patient protection, and provider governance.

Access to quality health services is still a matter of concern. Fee for service models are still in use and fail to provide adequate care. The value-based structure of ACOs will enable payment to providers based on health outcomes (Muhlestein et al., 2022). Regulatory reform may be required in the areas of developing primary care programs, comprehensive patient-centered care, cost reduction, quality improvement, improving coordination across health care programs, regulating data sharing for ACO coordination, decreasing barriers to rural provider participation, spending dollars for social services integration into ACOs, encouraging practice reform for health system change through state regulatory action, and making amendments to technical requirements for inadvertent noncompliance to facilitate transition to value-based payment models.

In future, the introduction of new models, regulatory reform, will facilitate the transition towards value-based service models. To adapt to the environment, organizations may need transformation in their business models. The involvement of CMS in introducing new program rules and benchmarks, driving adoption and performance, increase positive incentives to move towards value-based models and disincentives to steer away from fee-for-service models. 

Promotion: Accountable Care Organization ACO Complete Self-Assessment Guide Paperback – Import, 9 September 2017 by Gerardus Blokdyk (Author)

   

Keywords

racial disparities, value-based payment models, access, healthcare delivery, care model, community health, value-based healthcare, accountable care, ACOs, care coordination, equity, alternative payment models

References

Centers for Medicare & Medicaid Services. (2021). Accountable Care Organizations (ACOs). www.cms.gov. https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/ACO

Hagland, M. (2023). CMS Officials Announce ACO Participation Details, Associations Respond. Healthcare Innovation Group. https://www.hcinnovationgroup.com/policy-value-based-care/accountable-care-organizations-acos/article/21292938/cms-officials-announce-aco-participation-details-associations-respond

Joszt, L. (2020). The Future Success of ACOs Depends on Fixing Current Challenges. The American Journal of Accountable Care, 8(4). https://www.ajmc.com/view/the-future-success-of-acos-depends-on-fixing-current-challenges

Muhlestein, D., Saunders, R. S., Lesle, K. de, Bleser, W. K., & McClellan, M. B. (2022). Growth Of Value-Based Care And Accountable Care Organizations In 2022. Forefront Group. https://doi.org/10.1377/forefront.20221130.22253

The Regulatory Review. (2022). Reforming Accountable Care Organizations. www.theregreview.org. https://www.theregreview.org/2022/07/30/saturday-seminar-reforming-accountable-care-organizations/