Article Summaries

The landscape of distress in the terminally ill

Chochinov HM, Hassard T, McClement S, Hack T, Kristjanson LJ, Harlos M, Sinclair S, Murray A.
J Pain Symptom Manage. 2009 Nov;38(5):641-9. Epub 2009 Aug 26.
Manitoba Palliative Care Research Unit, University of Manitoba, Manitoba, Canada.

The aim of this study was to use the Patient Dignity Inventory (PDI) to describe a broad landscape of distress in patients who are terminally ill. Using the PDI, 253 patients were asked to indicate the degree to which they experience various kinds of end-of-life distress.

Findings

  • Palliative care patients reported an average of 5.74 problems (standard deviation, 5.49; range, 0-24), including physical, psychological, existential, and spiritual challenges.
  • Being an inpatient, being educated, and having a partner were associated with certain kinds of end-of-life problems, particularly existential distress.
  • Spirituality, especially its existential or “sense of meaning and purpose” dimension, was associated with less distress for terminally ill patients.

Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference

Puchalski C, Ferrell B, Virani R, Otis-Green S, Baird P, Bull J, Chochinov H, Handzo G, Nelson-Becker H, Prince-Paul M, Pugliese K, Sulmasy D.
J Palliat Med. 2009 Oct;12(10):885-904.
George Washington Institute for Spirituality and Health, The George Washington University, Washington, D.C., USA.

This report includes recommendations to a Consensus Conference sponsored by the Archstone Foundation of Long Beach, California, held February 17-18, 2009, in Pasadena, California. The Conference was based on the belief that spiritual care is a fundamental component of quality palliative care. The document and recommendations build upon prior literature, the National Consensus Project Guidelines, and the National Quality Forum Preferred Practices and Conference proceedings.

Reducing the potential for suffering in older adults with advanced cancer

Thompson GN, Chochinov HM
J Palliat Med. 2009 Oct;12(10):885-904.
Manitoba Palliative Care Research Unit, CancerCare Manitoba, Winnipeg, Manitoba, Canada.

This review seeks to uncover potential sources of distress in an elder’s physical, psychological, social and spiritual well-being to shed light on the unique challenges and needs facing this age group. The authors reviewed papers published after 1998 relating to older adults (aged 65 years and older or a mean age of 65 years and older) with advanced/terminal cancer receiving palliative, hospice, or end-of-life care.

Findings

  • Older adults with advanced cancer have unique needs related to changes in their physical, psychological, social, and spiritual well-being.
  • Changes in each of these domains may cause distress and the potential for growth and development during the final stages of advanced cancer.
  • Being aware of changes that occur with aging will help health care professionals tailor interventions to promote dignity-conserving care and greatly reduce the potential for suffering at the end of life.

Prognostic acceptance and the well-being of patients receiving palliative care for cancer

Thompson GN, Chochinov HM, Wilson KG, McPherson CJ, Chary S, O’Shea FM, Kuhl DR, Fainsinger RL, Gagnon PR, Macmillan KA.
J Clin Oncol. 2009 Dec 1;27(34):5757-62. Epub 2009 Oct 13.
Department of Psychiatry, University of Manitoba and Manitoba Palliative Care Research Unit, Winnipeg, MB, Canada.

The team’s objective was to identify the impact of prognostic acceptance/non-acceptance on the physical, psychological, and existential well-being of patients with advanced cancer. A Canadian multi-center survey was conducted of patients diagnosed with advanced cancer with estimated survival duration of 6 months or less.

Findings

  • Of the total number of participants, 74% reported accepting their situation and 8.6% reported accepting with “moderate” to “extreme” difficulty.
  • More participants with acceptance difficulties than without acceptance difficulties met diagnostic criteria for a depressive or anxiety disorder.
  • Non-Acceptors were younger, had more than high school education and had smaller social networks than Acceptors.
  • Of the Non-Acceptors, 42% described their experience as one of “moderate” to “extreme” suffering compared with 24.1% of Acceptors.
  • More than one third (37.5%) of Non-Acceptors reported feeling hopeless compared with 8.6% who had no difficulty accepting.
  • Qualitatively, participants described active and passive coping strategies that helped them accept what was happening to them, as well as barriers that made it difficult to come to terms with their current situation.
  • The challenge of coming to terms with a terminal prognosis is a complex interplay between one’s basic personality, the availability of social support, and one’s spiritual and existential views on life. Non-acceptance appears to be highly associated with feelings of hopelessness, a sense of suffering, depression, and anxiety, along with difficulties in terms of social-relational concerns.

Family satisfaction with care of a dying loved one in nursing homes: what makes the difference?

Thompson GN, Menec VH, Chochinov HM, McClement SE.
J Gerontol Nurs. 2008 Dec;34(12):37-44.
Manitoba Palliative Care Research Unit, CancerCare Manitoba, Winnipeg, Canada.

As part of a larger study examining end-of-life care in nursing homes, qualitative focus groups were conducted with bereaved family members to explain factors contributing to satisfaction and dissatisfaction with end-of-life care in the nursing home setting.

Findings

  • Content analysis of focus group data revealed two overarching themes that influenced family members’ satisfaction with care:
    • Ability of staff to recognize signs of imminent dying, and
    • Communication and information sharing about the resident’s status and plan of care.
  • Family members dissatisfied with their relative’s end-of-life care expressed feelings of guilt, anger, and frustration, both while the resident was alive and in the bereavement period.
  • The findings of this study have implications for clinicians committed to delivering quality end-of-life care to residents and their families, and provide the basis for educational interventions and quality care improvement initiatives in the long-term care setting.

Dignity-based approaches in the care of terminally ill patients

Thompson GN, Chochinov HM
Curr Opin Support Palliat Care. 2008 Mar;2(1):49-53. Review.
Manitoba Palliative Care Research Unit, Faculty of Nursing, University of Manitoba, Canada.

This review seeks to clarify what is meant by dignity at the end of life, what threatens dignity, and evidence of the domains that define dignity. A model of dignity is proposed from which interventions can be derived.

Findings

  • A lack of research exists exploring the concept of dignity. What can be gleaned from this work is that dignity is socially constructed and mediated in our relationships with others. Research has noted that self-perceived burden, depression, hopelessness and ‘the reflection patients see of themselves in the eye of the beholder’ are intimately connected to one’s notion of dignity.
  • A model of dignity in the terminally ill has been developed that outlines three areas that are most influential in shaping dignity.
  • Interventions such as dignity therapy and critical personal reflection are proposed as tools to promote dignity.
  • Despite the fact that little research exists exploring the notion of dignity at the end of life, a robust model of dignity exists and is helpful in directing interventions aimed at improving care at the end of life.

The Patient Dignity Inventory: a novel way of measuring dignity-related distress in palliative care

Chochinov HM, Hassard T, McClement S, Hack T, Kristjanson LJ, Harlos M, Sinclair S, Murray A.
Pain Symptom Manage. 2008 Dec;36(6):559-71. Epub 2008 Jun 24.
Department of Psychiatry, University of Manitoba, Winnipeg, Manitoba, Canada.

Using standard instrument development techniques, this study examined the face validity, internal consistency, test-retest reliability, factor structure and concurrent validity of the Patient Dignity Inventory (PDI). To establish its basic psychometric properties, the PDI was administered to 253 patients receiving palliative care, along with other measures addressing issues identified within the Dignity Model in the terminally ill. Cronbach’s coefficient alpha for the PDI was 0.93; the test-retest reliability was r = 0.85. The article includes a copy of the 25-item questionnaire.

Findings

  • Factor analysis resulted in a five-factor solution; factor labels include Symptom Distress, Existential Distress, Dependency, Peace of Mind, and Social Support, accounting for 58% of the overall variance.
  • Evidence for concurrent validity was reported by way of significant associations between PDI factors and concurrent measures of distress.
  • The PDI is a valid and reliable new instrument, which could assist clinicians to routinely detect end-of-life dignity-related distress.

Dignity Therapy: family member perspectives

McClement S, Chochinov HM, Hack T, Hassard T, Kristjanson LJ, Harlos M.
J Palliat Med. 2007 Oct;10(5):1076-82.
Faculty of Nursing, University of Manitoba, Winnipeg, Manitoba, Canada.

This paper presents data on bereft family members’ feelings about Dignity Therapy. The study focused on 60 family members of deceased terminally ill patients who previously took part in Dignity Therapy. By completing a questionnaire, the family members described the impact of the therapy on both the dying patient and themselves.

Findings

  • 95% of participants reported that Dignity Therapy helped the patient; 78% reported that it heightened the patient’s sense of dignity; 72% reported that it heightened the patient’s sense of purpose; 65% reported that it helped the patient prepare for death; 65% reported that it was as important as any other aspect of the patient’s care; and 43% reported that Dignity Therapy reduced the patient’s suffering.
  • Regarding family members, 78% reported that the generativity document helped them during their time of grief; 77% reported that the document would continue to be a source of comfort for their families and themselves; and 95% reported they would recommend Dignity Therapy to other patients of family members confronting a terminal illness.

Burden to others and the terminally ill

Chochinov HM, Kristjanson LJ, Hack TF, Hassard T, McClement S, Harlos M.
J Pain Symptom Manage. 2007 Nov;34(5):463-71. Epub 2007 Jul 5.
Department of Psychiatry, University of Manitoba, Winnipeg, Manitoba, Canada.

The aim of this study was to carefully examine “burden to others” and clarify its relationship with various psychosocial, physical, and existential issues arising in patients who are terminally ill. A cohort of 211 patients with end-stage cancer was assessed, using an assortment of validated psychometrics to document psychosocial, physical, and existential aspects of their end-of-life experience. This included an assessment of their sense of “burden to others.”

Findings

  • 40% of participants indicated a negligible sense of burden to others, scoring within the lowest quarter on an ordinal measure of “burden to others;” 25% scored within the second lowest quarter; 12% within the third quarter; and 23% within the highest or most severe range.
  • The most highly correlated variables with “sense of burden to others” included depression, hopelessness and outlook.
  • Four variables emerged in a multiple regression analysis predicting burden to others, including hopelessness, current quality of life, depression, and level of fatigue.
  • There was no association between sense of burden to others and actual degree of physical dependency.
  • Feeling a sense of burden to others is common among dying patients. Although 40% of the sample reported little in the way of sense of burden to others, the remainder endorsed higher degrees of burden-related distress, with 23% scoring within the most severe range.
  • The lack of association between “sense of burden to others” and the degree of physical dependency suggests this perception is largely mediated through psychological and existential considerations. Strategies that target meaning and purpose, depression, and level of fatigue could lessen this source of distress and enhance quality, dignity-conserving care.

Dignity in the terminally ill: revisited

Chochinov HM, Krisjanson LJ, Hack TF, Hassard T, McClement S, Harlos M.
J Palliat Med. 2006 Jun;9(3):666-72.
Department of Psychiatry, Family Medicine, University of Manitoba, Winnipeg, Manitoba, Canada.

This study used a quantitative approach to validate the Dignity Model, originally based on qualitative data. Themes and subthemes from the Dignity Model were used to devise 22 items. A group of 211 patients receiving palliative care were asked the extent to which they believed these specific issues were or could be related to their sense of dignity.

Findings

  • “Not being treated with respect or understanding” (87.1%) and “feeling a burden to others” (87.1%) were the issues most identified as having an influence on their sense of dignity.
  • All but 1 of the 22 items were endorsed by more than half of the patients and 16 items were endorsed by more than 70% of the patients.
  • Demographic variables such as gender, age, education, and religious affiliation had an influence on what items patients ascribed to their sense of dignity.
  • “Feeling life no longer had meaning or purpose” was the only variable to enter a logistic regression model predicting overall sense of dignity.
  • This study provides further evidence supporting the validity of the Dignity Model. Items contained within this model provide a broad and inclusive range of issues and concerns that may influence a dying patient’s sense of dignity. Sensitivity to these issues will draw care providers closer to being able to provide comprehensive, dignity conserving care.

Dying, dignity, and new horizons in palliative end-of-life care

Chochinov HM
CA Cancer J Clin. 2006 Mar-Apr;56(2):84-103; quiz 104-5. Review.
Manitoba Palliative Care Research Unit, Cancer Care Manitoba, Winnipeg, Manitoba, Canada.

This review provides an overview of psychosocial, existential, and spiritual aspects of the patient’s dying experience. The main focus is on empirical data examining these issues. Spiritual or existential suffering toward the end of life is explored, with an examination of the conceptual correlates of suffering, including: hopelessness, burden to others, loss of sense of dignity, and desire for death or loss of will to live. The empirically-derived Dignity Model is described in detail, with practical examples of diagnostic questions and therapeutic interventions to preserve dignity. Other interventions to reduce existential or spiritual suffering are described and evidence of their efficacy is presented.

Interventions to enhance the spiritual aspects of dying

Chochinov HM, Cann BJ.
J Palliat Med. 2005;8 Suppl 1:S103-15. Review.
University of Manitoba, Manitoba Palliative Care Research Unit, Cancer Care Manitoba, Winnipeg, Manitoba, Canada.

This paper summarizes relevant evidence pertaining to spirituality, dying patients, their health care providers, and family or informal caregivers. The authors examine the challenging issue of how to define spirituality, and provide a brief overview of the state of evidence addressing interventions that may enhance or bolster spiritual aspects of dying.

Dignity Therapy: a novel psychotherapeutic intervention for patients near the end of life

Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, Harlos M.
J Clin Oncol. 2005 Aug 20;23(24):5520-5.
Department of Psychiatry, Family Medicine, Community Health Sciences, and Faculty of Nursing, University of Manitoba, Canada.

This study examined the feasibility of Dignity Therapy and its impact on various measures of psychosocial and existential distress. Participants were terminally ill inpatients and patients receiving home-based palliative care services in Winnipeg, Canada, and Perth, Australia. They were asked to complete pre- and post-intervention measures of sense of dignity, depression, suffering, and hopelessness; sense of purpose; sense of meaning; desire for death; will to live; and suicidality. They were also asked to complete a post-intervention satisfaction survey.

Findings

  • 91% of participants reported being satisfied with Dignity Therapy; 76% reported a heightened sense of dignity; 68% reported an increased sense of purpose; 67% reported a heightened sense of meaning; 47% reported an increased will to live; and 81% reported that it had been or would be of help to their family.
  • Post-intervention measures of suffering showed significant improvement and reduced depressive symptoms.
  • Finding dignity therapy helpful to their family correlated with life feeling more meaningful and having a sense of purpose, accompanied by a lessened sense of suffering and increased will to live.

Understanding the will to live in patients nearing death

Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, Harlos M.
Psychosomatics. 2005 Jan-Feb;46(1):7-10.
Department of Psychiatry, University of Manitoba, Winnipeg, Canada.

This study examined concurrent influences on the will to live in 189 patients with end-stage cancer. The authors found significant correlations between the will to live and existential, psychological, social, and, to a lesser degree, physical sources of distress. Existential variables proved to have the most influence, with hopelessness, burden to others, and dignity entering into the final model.

Dignity and psychotherapeutic considerations in end-of-life care

Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, Harlos M.
J Palliat Care. 2004 Autumn;20(3):134-42. Review.
Department of Psychiatry, University of Manitoba, Winnipeg, Canada.

This paper reviews some of the research team’s findings, including an overview of the empirically based Dignity Model and the rationale for the psychotherapeutic intervention called Dignity Therapy. The paper also summarizes various psychotherapeutic approaches that have been considered for this vulnerable patient population.

Defining dignity in terminally ill cancer patients: a factor-analytic approach

Hack TF, Chochinov HM, Hassard T, Kristjanson LJ, McClement S, Harlos M.
Psychooncology. 2004 Oct;13(10):700-8.
CancerCare Manitoba, Winnipeg, Canada.

This study used factor-analytic and regression methods to analyze dignity data gathered from 213 cancer patients having less than 6 months to live. Patients rated their sense of dignity, and completed measures of symptom distress and psychological well-being.

Findings

  • Although most patients had an intact sense of dignity, 46% reported at least some, or occasional loss of dignity, and 7.5% indicated that loss of dignity was a significant problem.
  • The exploratory factor analysis yielded six primary factors: (1) Pain; (2) Intimate Dependency; (3) Hopelessness/Depression; (4) Informal Support Network; (5) Formal Support Network; and (6) Quality of Life.
  • Subsequent regression analyses of modifiable factors produced a final two-factor (Hopelessness/Depression and Intimate Dependency) model of statistical significance.
  • These results provide empirical support for the Dignity Model and suggest that the provision of end of life care should include methods for treating depression, fostering hope, and facilitating functional independence.

Dignity in the terminally ill: a developing empirical model

Chochinov HM, Hack T, McClement S, Kristjanson L, Harlos M.
Soc Sci Med. 2002 Feb;54(3):433-43.

This qualitative study was one of the first to ask terminally ill patients to explain their understanding of the term “dignity.” The team conducted semi-structured interviews over a 15-month period with 50 patients with advanced terminal cancer. All of the patients were recruited through an urban extended care hospital providing specialized palliative care services through both inpatient and community-based programming.

The research team analyzed the data using latent content analysis and constant comparison techniques. Four team members independently coded the data to categorize the responses.

Findings

The broad range of issues identified by patients fell into three major categories:

  • Illness-related issues
  • Dignity-Conserving Repertoire
  • Social Dignity Inventory

Each category contained several carefully defined themes and subthemes, which provide the foundation for the Dignity Model.

Dignity-conserving care: a new model for palliative care: helping the patient feel valued

Chochinov HM.
JAMA. 2002 May 1;287(17):2253-60.

Using segments of interviews with a patient, his wife and his palliative care physician, this article illustrates various aspects of dignity-conserving care. It describes the Dignity Model and ways clinicians can explicitly target the maintenance of dignity as a principle of bedside care for patients nearing death.

Dignity in the terminally ill: a cross-sectional cohort study

Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, Harlos M.
Lancet. 2002 Dec 21-28;360(9350):2026-30.

This article describes a study involving 213 terminal cancer patients who were asked to rate their sense of dignity. The outcome measures included:

  • a 7-point Sense of Dignity Item
  • the Symptom Distress Scale
  • the McGill Pain Questionnaire
  • the Index of Independence in Activities of Daily Living
  • A quality-of-life scale
  • A brief battery of self-report measures, including screening for desire for death, anxiety, hopelessness, will to live, burden to others and social support

Findings

  • 47% reported at least some degree of lost sense of dignity
  • 7.5% said loss of dignity was a significant concern. These patients were much more likely to report:
    • Increased pain
    • Decreased quality of life
    • Difficulty with bowel functioning
    • Heightened dependency needs (bathing, dressing, incontinence)
    • Loss of will to live
    • Increased desire for death
    • Depression
    • Hopelessness
    • Anxiety
  • Analysis of the data set yielded six primary factors that affect dignity:
    • Pain
    • Intimate dependency
    • Hopelessness/depression
    • Informal support network
    • Formal support network
    • Quality of life
  • Regression analysis of modifiable factors resulted in a highly significant two-factor model of hopelessness/depression and Intimate dependency needs. This underscores the importance of providing end-of-life care that:
    • Addresses depression
    • Fosters hope (meaning and purpose)
    • Encourages functional independence

Dignity-Conserving Care: application of research findings to practice

McClement SE, Chochinov HM, Hack TF, Kristjanson LJ, Harlos M.
Int J Palliat Nurs. 2004 Apr;10(4):173-9.
Faculty of Nursing, University of Manitoba, and Manitoba Palliative Care Research Unit.

A central tenet of palliative care is to help people die with dignity. This article provides a synopsis of the research team’s findings on what dignity means to those who are terminally ill, and factors that support and undermine dignity in this patient population. The article emphasizes the application of research findings for practice.

Dignity and the essence of medicine: the A, B, C, and D of dignity conserving care

Chochinov HM. BMJ. 2007;335(7612):184-187.
http://www.bmj.com/cgi/reprint/335/7612/184 Free online

Kindness, humanity, and respect are core values of medical professionalism, but they are at risk of being overlooked in the culture of modern health care. This article describes how careful attention to Attitudes, Behaviours, Compassion and Dialogue can support a patient’s sense of dignity, why these core values should be embraced by anyone working with patients.

Dignity and the eye of the beholder

Chochinov HM.
J Clin Oncol. 2004 Apr 1;22(7):1336-40. Review.
http://jco.ascopubs.org/cgi/reprint/22/7/1336 Free online

How people are viewed by those around them can have a big influence on how they think about themselves, especially when they become ill and rely on others for care. People who work in health care are the “eye of the beholder.” This article explains the importance of affirming every patient’s sense of dignity.

Thinking Outside the Box: depression, hope and meaning at the end of life

Chochinov HM.
J Palliat Med. 2003 Dec:6(6):973-7

This editorial discusses the need to step outside the box of preconceived therapy models to help palliative patients find purpose, meaning and dignity at end of life. Innovations such as the Dignity Model, Dignity Therapy and meaning-centred group psychotherapy are highlighted.

Dignity. Dignity? Dignity!

Chochinov HM.
J Palliat Med. 2008 Jun;11(5):674-5

This letter to the editor makes the case for broadening the core values of palliative care to include considerations such as dignity. It also encourages the use of simple messages and mnemonics for communicating core values and competencies to health care providers.