Top Ten Tips Palliative Care Clinicians Should Know About Dignity-Conserving Practice

Abstract

The acknowledgment and promotion of dignity is commonly viewed as the cornerstone of person-centered care. Although the preservation of dignity is often highlighted as a key tenet of palliative care provision, the concept of dignity and its implications for practice remain nebulous to many clinicians. Dignity in care encompasses a series of theories describing different forms of dignity, the factors that impact them, and strategies to encourage dignity-conserving care. Different modalities and validated instruments of dignity in care have been shown to lessen existential distress at the end of life and promote patient-clinician understanding. It is essential that palliative care clinicians be aware of the impacts of dignity-related distress, how it manifests, and common solutions that can easily be adapted, applied, and integrated into practice settings. Dignity-based constructs can be learned as a component of postgraduate or continuing education. Implemented as a routine component of palliative care, they can provide a means of enhancing patient-clinician relationships, reducing bias, and reinforcing patient agency across the span of serious illness. Palliative care clinicians—often engaging patients, families, and communities in times of serious illness and end of life—wield significant influence on whether dignity is intentionally integrated into the experience of health care delivery. Thus, dignity can be a tangible, actionable, and measurable palliative care goal and outcome. This article, written by a team of palliative care specialists and dignity researchers, offers 10 tips to facilitate the implementation of dignity-centered care in serious illness.

Introduction

The acknowledgment and promotion of dignity is commonly viewed as a cornerstone of person-centered care. Although the preservation of dignity is often highlighted as a key tenet of palliative care provision, the concept of dignity and its implications for practice remain nebulous to many clinicians. Dignity is most simply defined as “the quality or state of being worthy, honored, or esteemed.”¹

While models of dignity vary in terminology, they are conceptually similar, characterizing different types of dignity.^2,3 Human dignity, also referred to as intrinsic dignity, is an inherent and universal human quality. Social dignity—also known as attributed dignity—emerges through interactions between individuals, groups, and societies. A third type of dignity, inflorescent dignity, has been described as the realization of an individual and their environment interacting to live life expressive of their intrinsic dignity.² In other words, inflorescent dignity refers to “individuals who are flourishing as human beings” and “living lives that are consistent with and expressive of the intrinsic dignity of the human.”²

Whether through conscious or unconscious action, clinicians have tremendous potential to conserve and foster or undermine and violate a person's sense of dignity, predominantly through their approach to social dignity, and by impacting the care settings that influence how and if a person can flourish (i.e., inflorescent dignity). Palliative care clinicians—often engaging patients, families, and communities in times of serious illness and end of life, high-stakes decision-making, anticipatory grief and bereavement, or other crises related to symptom management or psychosocial complexity—wield significant influence on whether dignity is intentionally integrated into the experience of health care delivery. Thus, dignity can be a tangible, actionable, and measurable palliative care goal and outcome.

An investigation of the significance of the word “dignity” to patients with late-stage cancer yielded three key domains of dignity in terminal illness: illness-related issues, individual perspectives and practices, and interactions with others.⁴ Further exploration and expansion of this work yielded the “ABCDs” of dignity-conserving practice: attitudes, behaviors, compassion, and dialog⁵ (as shown in Table 1), and, subsequently, Dignity in Care,⁶ a strategy for patient-centered care that focuses on how the changes in mood, ability, function and interaction associated with serious illness can affect a person's sense of self and dignity. Table 2 provides the empirical model for dignity in the terminally ill, accompanied by principles for care that enhance dignity. In this article, clinicians discuss the strategies and impacts of incorporating dignity-focused care into routine practice through 10 practical tips (Table 3).

Table 1.

The “ABCDs” of Dignity-Conserving Practice (Adapted)⁵

Elements of the framework	Related considerations
Attitude: Examine one's own personal attitudes and assumptions regarding patients and their care.	Questions to reflect on the clinician's preconceived notions: • How would I be feeling in this person's situation? • What is leading me to draw these conclusions? • Have I checked whether my assumptions are accurate? • Am I aware how my attitudes toward the person may be affecting him/her/them? • Could my attitudes toward the person be based on something to do with my own experiences, anxieties, or fears? • Does my attitude toward my job help or hinder my ability to treat this person with care, openness, and respect?
Behavior: Make kindness and respect the basis of behavior with a goal of promoting trust and connection.	Ways to promote kind and respectful behavior: • Improve the tone of contact (e.g., treat contact with patients as you would any important clinical interaction, recognize ongoing contact as important to care—regardless of curative options) • Improve communication (e.g., show that the person has your full attention, always ask whether the patient has further questions and assure them there will be future opportunities to ask questions as they arise) • Provide small, but powerful acts of kindness (e.g., getting someone a glass of water, helping with their slippers, acknowledging a card or photograph in the room) • Remain present during clinical examination (e.g., always ask the patient permission to perform examination, set patients at ease and show appreciation of what they are about to go through—“I know this might feel a bit uncomfortable,” “Let me know if you feel we need to stop for any reason”)
Compassion: Seek to develop an awareness of the suffering of another, coupled with the wish to relive it.	Ways to develop and show compassion: • Get in touch with the struggles faced by the patients • Follow the example of compassionate role models • Look for ways to identify with those who are ill or suffering • Give an understanding look • Give a gentle touch on the shoulder, arm, or hand • Use a form of communication, spoken or unspoken, that acknowledges the person and the human challenges that accompany illness
Dialog: Acknowledge the person beyond the affliction, and the emotional impact that accompanies illness; seek to know the whole person.	Questions to elicit valuable whole-person information: • What should I know about you as a person to give you the best care possible? (Patient Dignity Question) • At this time in your life, what are the things that are most important to you, or that concern you the most? • Who else (or what else) will be affected by what's happening with your health? • Who should be there to help support you? (e.g., friends, family, spiritual or religious community) • Who else should we get involved at this point, to help support you through this difficult time? (e.g., psychosocial services, group support, chaplaincy, integrative medicine specialists)

Table 2.

Domains of the Model of Dignity in the Terminally Ill⁴

Major model domains	Themes and sub-themes
Illness-Related Concerns: How the illness itself affects personal feelings of dignity	• Symptom distress (e.g., physical, psychological) • Level of independence (e.g., functional capacity, cognitive acuity)
Person's Perspectives and Practices (The Dignity-Conserving Repertoire): How a patient's perspectives and practices can impact their own sense of dignity	• How the patient perceives autonomy, acceptance, maintenance of pride, hopefulness, role preservation, continued sense of self, resilience, and generativity/legacy • What the person does to ease the situation, including living in the moment, maintain normalcy, and/or seeking spiritual comfort
Person's Perspectives and Interactions with Others (The Social Dignity Inventory): How the quality of interactions with others can enhance or detract from one's sense of dignity	• Care tenor (being treated with respect/kindness), privacy boundaries, social support, worry about being a burden to others, concerns about those left behind (aftermath worries)

Table 3.

Top Ten Tips Palliative Care Clinicians Should Know About Dignity-Conserving Practice

Tip 1: Dignity is affirmed through specific and consistent clinician behaviors that can be taught and learned, and adapted to the clinician's practice. Tip 2: Dignity is preserved, promoted, and protected, in part, by the nature of the overall care setting. Tip 3: Every person experiences dignity and indignity differently—it is the clinician's responsibility to find out what dignity means to each person, here and now. Tip 4: Dignity-conserving care can relieve suffering by addressing loneliness, desire for hastened death, and existential distress, among other challenges. Tip 5: Dignity-based palliative care affirms patients' unique qualities and worth, thus supporting self-actualization, autonomy, and critical values. Tip 6: Several simple, brief, and useful tools to support the person's sense of dignity have been developed and show beneficial effects. Tip 7: Dignity therapy has a positive impact on the emotional and social well-being of patients and those receiving legacy documents. Tip 8: The Patient Dignity Question can serve as a core palliative care practice to anchor the relationship with patients in what is most important to them as human beings. Tip 9: Dignity-conserving care takes many forms throughout a disease course and must be adapted to the person, population, culture, and context. Tip 10: Dignity-conserving practice can help dismantle palliative care clinicians' biases, thus enhancing the tone of care and maintaining a person-centered lens.

Tip 1: Dignity Is Affirmed Through Specific and Consistent Clinician Behaviors That Can Be Taught and Learned, and Adapted to the Clinician's Practice

Basic implementation of dignity-conserving care involves addressing patients with genuine care and respect, engaging them as individuals, and allowing time to listen. These small gestures lay the foundation for providing dignity throughout the care spectrum.⁷ Engaging patients in the everyday clinical decision-making process helps preserve their feelings of security and control over their lives, and need not be exclusively left to major health care decisions. Promoting individuals' discretion over all choices—both minor and major—surrounding their care and day-to-day life adds to their feeling of autonomy and dignity^7–9

Interactions with clinicians and institutions are often associated with reductions in self-regard. This injury to self-regard commonly accelerates near the end of life as hospital visits increase in frequency and intensity.⁹ The palliative care clinician can counter this diminution by demonstrating respect, through care choices as simple as knocking before entering rooms, asking patients how they prefer to be addressed, and incorporating patient interpretations of their trajectory in care discussions and planning.^10,11

Tip 2: Dignity Is Preserved, Promoted, and Protected, in Part, by the Nature of the Overall Care Setting

While dignity can be preserved, promoted, and protected through patient-centered legislation and the creation of a health care culture centered on patient inclusion, equity, and justice, it can similarly be endangered by a lack of such principles. An intentional commitment to dignity enhancement in the health care setting is paramount to patient success. The health care setting comprises external environments (i.e., hospital policies and regulations) and internal environments (i.e., physical structures, organization infrastructure, people, and technology).¹² As a result, considering the barriers and facilitators of dignity-conserving care requires attention to the impacts of both external policies and internal systems on the patient experience. Critical external threats include any local, regional, or state policy that mitigates equity and facilitates disparities in health care delivery.^13–15

External environmental dignity-enhancing characteristics include policies that promote family-centered care and consideration of service area demographics in patient care models through strategies such as removing visiting-hour restrictions. Internal threats to dignity include lack of environmental privacy, compromised patient autonomy, and disrespectful and curt staff. Dignity can be enhanced in the internal environment through staff promotion of privacy, health system commitment to patient autonomy, a healing-centric physical environment (e.g., cleanliness, serene atmosphere, comfortable bed/furnishings, food that is familiar/pleasurable), streamlined and coordinated patient communication, and relationship development between the patient and care teams.^14,15

Tip 3: Every Person Experiences Dignity and Indignity Differently—It Is the Clinician's Responsibility to Find Out What Dignity Means to Each Person, Here and Now

Palliative care clinicians should evaluate the significance of each action taken in terms of dignity. While every human interaction has the potential uphold or insult dignity, violations of dignity commonly occur in the context of imbalanced relationships, particularly when one party (e.g., clinicians) holds more power, authority, or knowledge and possibly exhibits a lack of respect.^3,13 Conversely, promoting dignity involves engaging in humane, transparent, and compassionate interactions, where patients feel valued, and clinicians demonstrate empathy. Clinical interactions embedded in qualities such as reciprocity, empathy, rapport, and trust play a pivotal role in promoting dignity.

Addressing dignity in palliative care requires compassionate support¹⁶ and intensive caring,^3,13 whose elements include nonabandonment, affirmation, containing hope, and therapeutic humility. It is crucial to perceive patients as whole human beings, treating them with respect and affirming their core identity. Patients yearn to be recognized beyond their illnesses and affirmed in their entirety. Therefore, dignified encounters involve recurring interactions that should always be rooted in acknowledging personhood—seeing individuals for who they are rather than solely focusing on their ailments.¹⁷

Clinicians should appreciate the particular factors that can influence dignity for each individual patient. Delivery of dignity-conserving care can be facilitated by engaging in compassionate interactions with vulnerable individuals using tools like the Patient Dignity Question (PDQ) or the This Is ME questionnaire.^4,17–19 By upholding the inherent value and worth of every individual, clinicians can shape the dynamics of the relationship and preserve dignity in health care settings. Of note, dignity in care is not just about how clinicians treat and interact with patients but also about recognizing our shared humanity and vulnerability.

Tip 4: Dignity-Conserving Care Can Relieve Suffering by Addressing Loneliness, Desire for Hastened Death, and Existential Distress, Among Other Challenges

Terminally ill patients often suffer existential isolation and distress, which can lead to desire for hastened death.²⁰ In response, dignity-conserving care has emerged as a psychotherapeutic intervention, with formalized techniques, such as dignity therapy (DT)²¹ and meaning-centered psychotherapy (MCP).²² DT offers patients an opportunity to reflect on their life with a trained facilitator and share their thoughts and memories with family. In the original pilot study on DT, post-intervention measures showed significant improvement and reduced depressive symptoms.²¹ A subsequent meta-analysis revealed that DT significantly improved dignity-related distress, particularly existential distress and distress associated with a lack of social support.²³ MCP is another intervention that focuses directly on identifying sources of meaning in the patient's life.

The pilot randomized trial demonstrated short-term effectiveness of MCP in oncology patients' spiritual well-being and quality of life.²² Additional randomized trials have been conducted on both individual and group versions of MCP, and found reductions in distress across several secondary variables, including desire for hastened death.^24,25 Clinicians can better care for patients suffering existential distress in serious illness by affirming their dignity and facilitating their search for meaning by incorporating principals of DT or MCP into their practice.

Tip 5: Dignity-Based Palliative Care Affirms Patients' Unique Qualities and Worth, Thus Supporting Self-Actualization, Autonomy, and Critical Values

Dignity-conserving palliative care is essential to help patients navigate their journey with integrity, helping to reconnect them to their own wholeness or integrity of self—even in the face of suffering. Humans have an intrinsic desire to achieve happiness, self-awareness, and fulfillment. Maslow's Hierarchy of Needs²⁶ is a theory of psychological health predicated on fulfilling innate human needs in order of priority (physical needs, safety, belongingness, self-esteem, and self-actualization), and provides a framework for providing dignity-conserving care in palliative care. It is personalized around patients' unique core values and qualities, therefore improving sense of meaningfulness and likelihood of reaching self-actualization.²⁷

Chochinov's DT further established the need for compassionate care,²⁸ while his recently coined “intensive caring” offers guidance on how to provide care that will satisfy patients' need to feel seen and appreciated.¹⁰ Interventions predicated on supporting patient goals promote dignity, decrease suffering, and enhance patients' sense of respect, self-worth, autonomy, and self-preservation. They may also augment patients' ability to cope with their disease.

Dignity-conserving practice includes eliciting patients' reflections of life and accomplishments, addressing fears and other unresolved emotions about their illness/prognosis, attending to spiritual needs, and encouraging fulfillment of unfinished business and pursuit of achievable goals. Active consideration of patients' critical values can potentially mean the difference between distress and despair, and relief and wholeness at the end of life.²⁹

Tip 6: Several Simple, Brief, and Useful Tools to Support the Person's Sense of Dignity Have Been Developed and Show Beneficial Effects

While 11 dignity self-report instruments have been identified, 3 tools, including the Patient Dignity Inventory (PDI), Jacelon's Attributed Dignity Scale (JADS), and the Inpatient Dignity Scale (IPDS), have acceptable reliability, construct, and criterion validity, are available in multiple languages, and are recommended for clinical use in supporting dignity.³⁰ The PDI was the first to be developed and is now a widely studied reliable 25-item survey that assesses psychosocial, existential, and symptom-related distress.³¹ While it was initially validated in patients at the end-of-life, the PDI has been demonstrated to be applicable and beneficial in patients experiencing critical illness.³²

Similarly, JADS is a brief 18-item index tested in community-dwelling older patients to measure self-perceived attributed dignity, which can be utilized to explore how effective dignity-preserving interventions are for this population.³³ The IPDS can be used to measure dignity in the inpatient hospital setting and serves as a 21-item effective questionnaire of inpatients' perceived expectations of and satisfaction with daily care.³⁴ These uncomplicated and concise tools can be used in an efficient, timely manner by nurses, physicians, social workers, and chaplains to bolster outpatient, as well as inpatient experiences and to ultimately improve patient quality of care.

Tip 7: Dignity Therapy Has a Positive Impact on the Emotional and Social Well-Being of Patients and Those Receiving Legacy Documents

Although relatively recently developed, DT has been extensively studied. Despite heterogeneity of study design and outcomes, high-quality evidence supports positive effects for both patients and loved ones. One recent meta-analysis of 14 randomized controlled trials (RCTs) of DT in cancer patients found statistically significant effects on hope, anxiety, and depression at post-intervention, as well as sustained effects on anxiety and depression one month later.³⁵

Individual trials have shown benefits in a range of more specific outcomes. For example, one high-quality RCT demonstrated significantly superior quality of life, sense of dignity, satisfaction, improvement of family appreciation, and belief that the intervention would help their families among patients who received DT, compared to patients randomized to standard palliative care or person-centered care.³⁶ A smaller body of evidence supports positive effects of DT on family members regarding outcomes including meaning, helpfulness, reported hopefulness and stress, preparation for death, and lasting comfort during grief.³⁷ Palliative care clinicians can incorporate DT-based approaches to communication to improve patient well-being and legacy-building at end-of-life, as well as to support bereaved family members.

Tip 8: The Patient Dignity Question Can Serve as a Core Palliative Care Practice to Anchor the Relationship With Patients in What Is Most Important to Them as Persons

The PDQ, “What do I need to know about you as a person to give you the best care possible?” is a succinct instrument that can be used during an initial palliative care consult to enhance the clinician's understanding of a patient's sense of self, goals, and priorities, as well as to build rapport. The PDQ was originally studied among patients receiving inpatient palliative care, who were expected to die within six months.¹⁷ However, its purpose to affirm dignity by eliciting personhood and individual values has broader relevance, applicability, and importance.³⁸

Almost universally, without regard to stage or prognosis, or to the setting of care, patients with serious and complex illness feel the need to be known for who they are and what is most important to them, rather than only in terms of their disease—that is, as persons, not just as patients. Thus, extension of the PDQ beyond the end-of-life context is appropriate, with evaluation to date suggesting that it can and should be integrated routinely as a core practice both by specialists in palliative care and at the nonspecialist level by all clinicians caring for patients and families with palliative needs.

Routine use of the PDQ has demonstrated feasibility in inpatient and ambulatory settings.^38,39 Analysis of routine responses to the PDQ at a dedicated cancer center yielded distinctive and richly self-reflective information, particularly among older patients.³⁹ Oncology nurses in this center's clinics have successfully integrated the PDQ within routine assessment of patients' personhood and values from the time of diagnosis; responses are documented on a template for ready access by the full health care team in the electronic health record (EHR).⁴⁰ These clinicians, like others in different professions and disciplines, have embraced the PDQ as an intervention supplying new information to support person-centered care, while strengthening the therapeutic relationship and satisfaction engaging in their own vocation. To optimize efficiency in high-volume oncology clinic practices, the electronic patient portal has recently been leveraged to elicit PDQ responses from patients with upcoming visits, where personhood and values can be further explored.

Tip 9: Dignity-Conserving Care Takes Many Forms Throughout a Disease Course and Must Be Adapted to the Person, Population, Culture, and Context

Dignity-conserving care cannot be approached in a wholly uniform manner. Context, longevity, and disease state impact dignity-related concerns, and dignity-conserving instruments and models have been adapted across cultures and disease spectra. A study examining responses to the PDQ in patients with cancer suggested that disease course impacts perceptions of dignity and personhood. As patients approached death, their responses became more centered around identity and personhood and centered less upon illness-related concerns.³⁹ Analyses of responses to the PDQ in hospitalized patients and psycho-oncology patients have yielded different priorities, suggesting that delivering dignity-conserving care is not a monolithic task,^38,41 and that a variety of context-specific features should be considered in exploring and treating any individual's dignity-related distress. Similarly, a wealth of cross-cultural adaptations of DT have yielded subtly different interview guides and outcomes based upon culturally relevant variations in interpersonal interactions and perceptions of death.^42–44

Notably, many of these studies across cultures and disease states have found both significant value and feasibility in delivery of culturally modified dignity-focused assessments and interventions,^38,39,42 suggesting that adapting dignity-focused care models to culture and disease context and provides a valuable means of implementing dignity-conserving care. The palliative care clinician should consider relevant cultural, demographic, and disease-related characteristics when considering how best to provide dignity-conserving care to the individual patient.

Tip 10: Dignity-Conserving Practice Includes Dismantling Palliative Care Clinicians' Biases, Thus Enhancing the Tone of Care and Maintaining a Person-Centered Lens

The Social Care Institute for Excellence defines dignity in care as follows: “[provision of] care that supports the self-respect of the person, recognizing their capacities and ambitions, and does nothing to undermine it.”⁴⁵ The Institute of Medicine has defined patient-centered care as follows: “care that is respectful of and responsive to individual patient preferences, needs, and values.”⁴⁶ Both of these definitions involve a deep respect for the patient and their individual goals of care. The interpersonal dimensions of a patient-centered care approach combine patient communication, understanding of the patient, and awareness that all team members affect the relationship with the patient. Effective communication and understanding of the patient begin with empathic regard for both medical and nonmedical needs of the patient and those close to them. Enfranchising all team members in this empathic engagement around personhood reinforces a culture of caring.⁴⁷

Patient autonomy is central to providing dignity-based care at the end of life. Emphasizing patient autonomy shifts medical decision-making from paternalism toward a more egalitarian and participative model, enabling clinicians to understand the beliefs and considerations underpinning the patient's or family's wishes.⁴⁸ Changing the care focus from the provider's perception of necessary next steps to incorporate patient wishes and rationale will appear to minimize the clinician's bias, thereby reducing the weight of their own perspectives and values in comparison to the patient's. The Platinum Rule—do unto patients as they would want done unto themselves—provides a means of doing so by enabling clinicians to avoid superimposing their own perceptions and biases upon patient condition and situation,⁴⁹ allowing for delivery of individualized, goal-concordant care.

Conclusion

While many definitions of dignity in health care exist, the majority focuses on the individual and their interactions with others, including members of the health care ecosystem. The evidence on dignity-conserving care and associated instruments^{17,21–25,30,36,38,39} provides an evidence-based construct and series of strategies to help palliative care clinicians engage patients, build relationships, approach, and address distress of various types.

There are several principles of care that can enhance dignity, including affirming the person's value, viewing whole persons apart from their disease, addressing pain and discomfort, dealing with fears and anxieties, and helping people maintain a feeling of control and independence.⁵⁰ Dignity-conserving constructs can be learned as a component of postgraduate or continuing education. Implemented as a routine component of palliative care, they can provide a means of enhancing patient-clinician relationships, reducing bias, and reinforcing patient agency across the span of serious illness. Instruments such as the PDQ and PDI can be used to elicit patient values and sources of distress, and even to guide intervention. Finally, DT can be used as a tool to treat existential distress at the end of life, while providing a legacy to those who will eventually mourn the patient's death.

Funding Information

No funding was received for this article.

Author Disclosure Statement

No competing financial interests exist.