The Model In Detail

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The Model Explained

Since 1995, a Winnipeg-based research team and their international collaborators have been exploring the importance of patient dignity. Their findings show that a patient’s sense of dignity can have a profound impact on patient well-being and satisfaction with the health care system – and one of the biggest factors is the way patients are treated by health care providers.

This section outlines:

The model of major dignity influencers
Tools developed by the research team to support the Dignity approach in the health care workplace

The Dignity Model

The team’s initial research has been distilled into the Dignity Model, which shows three major categories of factors that affect the patient’s sense of dignity:

  • Illness-Related Issues: How the illness itself affects personal feelings of dignity
  • Dignity-Conserving Repertoire: How a patient’s own perspectives and practices can impact their sense of dignity
  • Social Dignity Inventory: How the quality of interactions with others can enhance or detract from one’s sense of dignity

 

The Dignity Model
Category Themes and Sub-themes
Illness-Related Issues

Symptom distress

Level of independence

The Patient’s Perspectives and Practices

(The Dignity-Conserving Repertoire)

How the patient perceives the situation

What the patient does to ease the situation


Interactions with Others

(The Social Dignity Inventory)

Illness-related issues

Studies of cancer patients show illness may affect sense of dignity because of concerns about independence and distressing symptoms.

Level of independence

Illness can reduce a person’s sense of independence in two ways:

  • Cognitive: Not being able to think clearly – because of either the illness or drug therapy
  • Functional: Inability to perform the tasks of daily living
Symptom distress

Illness symptoms can cause two forms of distress:

  • Physical: The strong link between pain, depression and anxiety is well-documented. Patients often say that intense, prolonged pain can make them feel that personal dignity has been lost and life is no longer worth living.
  • Psychological: Uncertainty about one’s health status, treatment and what the future will bring can cause enormous fear and anxiety – which in turn threatens the patient’s sense of dignity. The two main forms of psychological distress are uncertainty about one’s health status, and death anxiety – worry or fear regarding the process or anticipation of death and dying.

The Dignity-Conserving Repertoire

Even when facing serious illness and death, many people maintain their sense of dignity through their own personal perspectives and practices. This intuitive protection of “self” can be encouraged by the way we provide care.

Dignity-Conserving Perspectives

A personal sense of dignity is often based on long-held notions of what makes people “themselves.” With advancing illness, people can keep this sense of self intact by holding onto perspectives such as:

  • Autonomy and sense of control
  • Acceptance of what is happening
  • Pride
  • Hopefulness about something in the future
  • Continuing to identify with their self-defined roles (for example, spouse, parent, teacher, contributing citizen)
  • An enduring belief that they are worthy of respect
  • Resilience and fighting spirit
  • Feeling that they are leaving a legacy
Dignity-Conserving Practices

People can use personal approaches and techniques to bring dignity to their lives while ill:

  • Living in the moment (focusing on immediate issues or tasks instead of worrying about the future)
  • Maintaining routines (which helps people manage day-to-day challenges)
  • Seeking spiritual comfort (finding solace in a religious or spiritual belief system)

The Social Dignity Inventory

How patients believe they are seen by others can have a powerful influence on their sense of dignity.

Patients’ preferences in these areas are as dynamic and individual as their own life experiences. It’s important to allow the patient to define what is most significant for him or her. Studies point to five major factors:

Privacy boundaries

Loss of privacy is a difficult transition for most people who rely on others for care or support, whether they are still living in their own home, with a family member or in a care facility. Privacy boundaries are individual, but most people feel their dignity is encroached when they rely on others for bathing and toileting.

Social support

Having a support network of family and friends influences feelings of dignity and comfort.

Care tenor

People who work in health care can affirm a patient’s sense of value and dignity by paying careful attention to the tone of care. The more the patient’s value can be affirmed, the more likely the patient’s sense of dignity will be upheld.

Burden to others

Chronically ill or dying patients can become very distressed if they feel they are becoming a burden to caregivers.

Aftermath concerns

Dying patients may worry about how their death may cause suffering for those who are left behind. They may be concerned about parenting and finances, for example.

 

Dignity Tools

The Dignity Model is the basis for practical tools to support people who work in health care:

The Patient Dignity Question (PDQ) is a key question that should be considered every day by those who work in health care
The Patient Dignity Inventory (PDI) covers 25 potential patient concerns that should be regularly evaluated by healthcare providers
Dignity Therapy is a model for individualized psychotherapy for patients near end of life

The Patient Dignity Question (PDQ)

The PDQ is a simple, open-ended question: “What do I need to know about you as a person to give you the best care possible?”

Research has shown that this single question can identify issues and stressors that may be important to consider when planning and delivering the patient’s care and treatment. The intent is to reveal the “invisible” factors that might not otherwise come to light – and to identify these concerns early in the process.

The PDQ is useful during every stage of care and treatment, such as:

  • During routine physicals
  • While carrying out diagnostic tests
  • When admitting patients
  • Before providing personal care
  • When considering forms of treatment or therapy
  • While discussing home care or long-term care arrangements

The intent is to get everyone in the health care community thinking about patients as unique human beings, rather than as a specific illness or collection of symptoms.

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The Patient Dignity Inventory (PDI)

The PDI is designed to give clinicians a broad overview or “snapshot” of how the patient is doing at any point in time.

Using a simple questionnaire, patients are asked to rate their current condition on the basis of 25 different indicators. Each question is based on empirical research into the most common factors influencing patients’ personal sense of dignity.

For each factor, the patient indicates his/her degree of concern on a five-point scale, with 1 representing “not a problem” and 5 representing “an overwhelming problem.”

The questionnaire is designed to be used by physicians, nurses, social workers, pastoral care providers – anyone attempting to evaluate how the patient is coping. A list of therapeutic interventions has been developed to address the 20 major areas of concern.

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Dignity Therapy for dying patients

Dignity Therapy was developed by Dr. Harvey Max Chochinov to assist people dealing with the imminent end of their lives.

This brief intervention can help conserve the dying patient’s sense of dignity by addressing sources of psychosocial and existential distress. It gives patients a chance to record the meaningful aspects of their lives and leave something behind that can benefit their loved ones in the future.

During a 30 to 60 minute session, the therapist asks a series of open-ended questions that encourage patients to talk about their lives or what matters most to them. The conversation is recorded, transcribed, edited and then returned within a few days to the patient, who is given the opportunity to read the transcript and make changes before a final version is produced. Many choose to share the document with family and friends.

Advantages of Dignity Therapy
Concerns addressed by Dignity Therapy
Satisfaction with Dignity Therapy
Dignity Therapy questions
Dignity Therapy training
Feedback from patients and families

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Advantages of Dignity Therapy

Dignity Therapy borrows elements from other supportive techniques, such as life review, logotherapy and existential psychotherapy. Unlike life review, Dignity Therapy is not a historical recounting of events – it is a recounting of thoughts, ideas and events that are particularly relevant and meaningful for patients to recount and pass along to others. For most patients, it is an opportunity to share the moments that shaped their lives.

An important difference of Dignity Therapy is its grounding in sound research into dying patients’ self-reported notions of dignity. It addresses the dying patient’s need to feel that life has had meaning, and to do something for loved ones that will endure beyond the patient’s own life. It also helps the patient get in touch with the accomplishments and experiences that have made them unique and valued human beings.

Initial trials suggest Dignity Therapy offers many advantages over other supportive approaches:

  • It is brief
  • Can be done at the bedside
  • Has the potential to favourably influence patients as well as their loved ones
  • Places less weight on interpretation, insight and “working through,” and more emphasis on the meaning-enhancing process itself

How Dignity Therapy addresses end-of-life concerns

Dignity Therapy deals with emotional pain by targeting its source. The content, protocol and questions are all guided by the Dignity Model sub-themes.

The dying patient’s strong need for “generativity” and “legacy” is the basis for the therapy. The therapy creates something that will transcend the patient’s death and extend his or her influence across time. Capturing the patient’s thoughts in written form is particularly effective because it increases the sense that whatever is said will be preserved for the future.

However, simply creating the legacy document is not enough. Those who practice Dignity Therapy must listen to these stories with genuine empathy, attentiveness, interest and sensitivity. Anything less will fail to meet the patient’s need for treatment that is unconditionally positive and caring in tone.

The questions asked during Dignity Therapy are shaped by the Dignity-Conserving Perspectives and Aftermath Concerns that are identified in the Dignity Model. Each area of inquiry lets patients speak to issues that may reinforce their sense of personhood and sustain a sense of meaning, purpose and self-worth – thereby decreasing distress and improving their quality of life.

Satisfaction with Dignity Therapy

The first clinical trial using Dignity Therapy has overwhelmingly affirmed the value of this method for patients and families.

Patient satisfaction with Dignity Therapy

Satisfied or highly satisfied 91%
Helpful or very helpful 86%
Increased sense of dignity 76%
Increased sense of purpose 68%
Heightened sense of meaning 67%
Increased will to live 47%
Believed it had or would help their family 81%

Families’ perceived benefits for the patient

Helped the patient 95%
Would recommend it to other patients 95%
Gave the patient a greater sense of dignity 78%
Heightened the patient’s sense of purpose 72%
Helped the patient prepare for death 65%
Was an important as aspect of care for their deceased loved ones as anything else that was done on their behalf 65%
Reduced patient’s suffering 43%

Benefits for the family

Helped surviving family during time of grief 78%
Will continue to comfort family 77%

Since the first trial, hundreds of patients have participated in Dignity Therapy in Canada, the United States, Australia, China, Japan, Denmark and Sweden. The most compelling evidence of its effectiveness is the stories of those who have experienced it.

Questions asked during Dignity Therapy

“Tell me a little about your life history, particularly the parts that you either remember most, or think are the most important. When did you feel most alive?”

“Are there specific things that you would want your family to know about you, and are there particular things you would want them to remember?”

“What are the most important roles you have played in life (family roles, vocational roles, community service roles, etc.)? Why were they so important to you, and what do you think you accomplished in those roles?”

“What are your most important accomplishments, and what do you feel most proud of?”

“Are there particular things that you feel still need to be said to your loved ones, or things that you would want to take the time to say once again?”

“What are your hopes and dreams for your loved ones?”

“What have you learned about life that you would want to pass along to others? What advice or words of guidance would you wish to pass along to your (son, daughter, husband, wife, parents, others)?”

“Are there words or perhaps even instructions you would like to offer your family to help prepare them for the future?”

“In creating this permanent record, are there other things that you would like included?”

Reproduced with permission from the Journal of the American Medical Association.

Dignity Therapy training

Learning modules for Dignity Therapy are now available. Anyone interested in training can write to the Manitoba Palliative Care Research Unit at mpcru@cancercare.mb.ca.

Since the first trial, hundreds of patients have participated in Dignity Therapy in Canada, the United States, Australia, China, Japan, Denmark and Sweden. The most compelling evidence of its effectiveness is the stories of those who have experienced it.

In their own words

Since the first trial, hundreds of patients have participated in Dignity Therapy in Canada, the United States, Australia, China, Japan, Denmark and Sweden. The most compelling evidence of its effectiveness is the stories of those who have experienced it.

Comments from patients

“I see (taking part in this study) as one reason why I am alive.”

“It’s helped bring my memories, thoughts and feelings into perspective instead of all jumbled emotions running through my head. The most important thing has been that I’m able to leave a sort of ‘insight’ of myself for my husband and children and all my family and friends.”

“Dignity Therapy was a lovely experience. Getting down on paper what I thought was a dull, boring life really opened my eyes to how much I really have done.”

“This experience has helped me to delve within myself and see more meaning to my life. I really look forward to sharing it with my family. I have no doubt that it will be enlightening to them.”

Comments from families

“Mom was extremely closed emotionally and had huge difficulties expressing her feelings. This gave her an opportunity to do so without feeling vulnerable.”

“He had something to say, wanted to be heard, wanted to pass on a message of hope. It helped him find some value in what he had done and remember who he was.”

“Being able to read his words will be a way of helping me to remember him, and to think of him. I didn’t always understand him, because he was a free spirit and I was the worrier. Maybe I didn’t trust God enough. I’m glad I’ll have his words to comfort me.”

“(The transcript was) magnificent. (My husband) wanted to contribute. The interview gave him a ‘second chance’ to do something to help.”

“Reading the document gave my mom a sense of accomplishment, I believe. It gave her a tangible way of looking back at a life well-lived.”

“He felt that our grandsons – including our latest, whom unfortunately he never lived to see – would get some idea of his life and what he had achieved.”

“(Dignity Therapy” legitimizes your life and provides an opportunity to put down on paper what you hope is your legacy.”

“I would say that it was more helpful than any mourning aspect. It helped me move past it. Family and friends are certainly a support but through the document, my mom was also able to provide support.”

“It is something to hold onto at the time of Dad’s passing and it made Dad’s life and ways alive and tender.”

“I think the Dignity Therapy truly helped him feel as though he were doing something useful and to be able to leave behind a part of himself. That in turn has helped myself and the children as it is almost like receiving a special gift of his words that we can have for our lifetime.”