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Toolkit

Practical tools have been developed to support people working in health care as they address people's emotional needs. Some of these tools, such as the PDQ, can be adapted to any health care situation and setting. Others are designed for specific situations where patient dignity may be at risk.

This section introduces:

The Patient Dignity Question (PDQ): The key question everyone working in health care should consider when interacting with patients

The Patient Dignity Inventory (PDI): 25 potential concerns that should be regularly evaluated by health care providers

Therapeutic Interventions: Practices to address the 20 most common concerns identified in dignity research

Dignity Therapy for dying patients: A model for individualized psychotherapy, developed and piloted by the team and intended for people 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 someone'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.

For example, consider these scenarios:

  • A man arrives at the ER following a car accident. The impact of the airbag has broken some of his fingers and perhaps damaged some nerves. It’s amazing that the man escaped the crash without more serious injuries, and he’s lucky that the injury was to his left hand because he is clearly right-handed. His pain has been addressed.Even so, his level of agitation is completely over the top. He's carrying on as if his life is at risk.

    An observer might assume the man is just hysterical and unbalanced...until someone asks the Patient Dignity Question. They learn that the man is a professional musician who has recently been asked to join one of the finest symphony orchestras in the world, the job he's dreamed of for a decade.

    Suddenly the hospital staff has the key piece of information they need to deal with the distraught man in a constructive and sensitive way. This information will be valuable to the health care team, and to everyone who comes in contact with the patient through the entire course of treatment.

  • A woman stumbles through the doors of an inner-city hospital in soiled, ragged clothing. Her speech is slurred and she can't seem to keep her balance. She smells of beer and cigarettes.

    It would be easy to assume the woman is merely drunk, but asking the Patient Dignity Question reveals that she is a diabetic who has lost her medication. Her blood sugar levels have reached dangerously high levels and she is at risk of falling into a coma.

When to ask the PDQ

The Patient Dignity Question 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

Not everyone needs to ask the question aloud, but everyone working in health care can consider the question as they reflect on the best way to deal with individuals and their families.

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

The Patient Dignity Inventory (PDI)

The PDI is designed to give clinicians a broad overview or "snapshot" of how someone in their care 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 people's personal sense of dignity.

For each factor, the person 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 a person in their care is coping.

The Patient Dignity Inventory (PDI)

For each item, please indicate how much of a problem or concern these have been for you within the last few days.

1 = NOT A PROBLEM 2 = A SLIGHT PROBLEM 3 = A PROBLEM
4 = A MAJOR PROBLEM 5 = AN OVERWHELMING
1 Not being able to carry out tasks associated with daily living (e.g., washing myself, getting dressed)
2 Not being able to attend to my bodily functions independently (e.g., needing assistance with toileting-related activities)
3 Experiencing physically distressing symptoms (e.g., pain, shortness of breath, nausea)
4 Feeling that how I look to others has changed significantly
5 Feeling depressed
6 Feeling anxious
7 Feeling uncertain about illness and treatment
8 Not being able to think clearly
9 Not being able to continue with my usual routines
10 Feeling like I am no longer who I was
11 Not feeling worthwhile or valued
12 Note being able to carry out important roles (e.g., spouse, parent)
13 Feeling that life no longer has meaning or purpose
14 Feeling that I am not making a meaningful and/or lasting contribution in my life
15 Feeling that I have "unfinished business" (e.g., things that I have yet to say or do, or that feel incomplete)
16 Concern that my spiritual life is not meaningful
17 Feeling that I am a burden to others
18 Feeling that I don't have control over my life
19 Feeling that my illness and care needs have reduced my privacy
20 Not feeling supported by my community of friends and family
21 Not feeling supported by my health care providers
22 Feeling like I am no longer able to mentally "fight" the challenges of my illness
23 Not being able to accept the way things are
24 Not being treated with respect or understanding by others

Therapeutic Interventions

Dignity research shows that people may be dealing with any or all of these factors as they interact with the health care system.

Click on the sub-themes to learn more about how the health care team can deal with each concern and strengthen patients' personal sense of dignity.

Therapeutic Interventions
CategoryThemes and Sub-themes
Illness-Related Concerns

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)

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 me aningful 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

Advantages of Dignity Therapy

Dignity Therapy borrows elements from other supporti ve techniques, such as life review, logotherapy and existential psychotherapy. Unlike life review, Dignity Therapy is not a historical recounting of events – i t 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

Dignity Therapy training workshops are held regularly. To register, visit https://workshops.dignityincare.ca/default.asp.

For more information, please contact workshop@dignityincare.ca.

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."