A sense of pride in oneself; self-respect OED
“My illness is a routine incident in his rounds while for me it is the crisis of my life. I would feel better if I had a doctor who at least perceived this incongruity…. I just wish he would…give me his whole mind just once, be bonded with me for a brief space, survey my soul as well as my flesh, to get at my illness, for each man is ill in his own way.”
In Medicine, things occur in threes. If one encounters two patients with a particular disease, a third case will inevitably appear. So a recent Medical Grand Rounds that dealt with the role of the physician in nurturing human dignity, presented by Dr. Ingrid Harle, should not have surprised me. Her superb and touching rounds was primed by two prior “cases” which caused me to think consciously about human dignity, an important topic which I had been guilty of treating with some degree of benign neglect.
The first of the troika of dignity cases emerged from Hampton, a small town in southern New Brunswick, where I spent my teenage years. In Hampton, a remarkable teacher and author, Anne Heustis Scott, wrote the story of John Peters Humphrey.
In the early 1900s John was a student at Hampton Consolidated School, the same green and white clapboard, three-story school that I attended in the 1970s. John experienced substantial bullying in this school. His tormentors focused on a physical deformity (related to the loss of his arm at age six) in their assault on his dignity. However, John did not surrender his sense of self-worth. Rather this adversity inspired him to consider human dignity, what it meant, how it could be described, and how it could be protected. Although most Canadians are unaware of his contributions, John drafted the Universal Declaration of Human Rights. The Declaration begins with the phrase, “Whereas recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world…” For the first time, an international organization, the United Nations General Assembly, recognized that fundamental human rights were to be universally protected for all people and to be respected by all nations. Proclaimed in Paris on December 10 1948, the Declaration has been ignored and violated, but remains a proud statement of what we aspire to achieve as a species. Without diminishing the important leadership role that many others, notably Eleanor Roosevelt, played in the creation of the Declaration, the contribution of John Peters Humphrey to the enunciation and protection of human dignity is an achievement in which all Canadians can take pride.
First Lady of the United States, Eleanor Roosevelt holding the Universal Declaration of Human Rights in 1948
I highly recommend Anne’s book The Boy Who Was Bullied to anyone interested in human dignity. Though it is written for children, I enjoyed every page. Her compelling book inspired a CBC Documentary about bullying and dignity.
The next of my lessons in the Dignity triad, came in a rather surprising venue, the Morbidity and Mortality Rounds (M&M) in the Department of Medicine at Queen’s University. These are rounds in which physicians review cases that did not go well, discuss medical errors and ways to improve care. M&M Rounds have a long tradition as Medicine’s Quality Improvement program and a platform for establishing final diagnoses and a platform to suggest best practices. M&M is not the forum in which one expects to be educated about human dignity. However, Dr. Jim Boseovski, an Assistant Professor in the Division of General Internal Medicine, did just that.
Dr. Boseovski presented a case entitled, Just Another Case of Confusion. He led us through the story of a single, elderly woman who had repeated admissions to hospital for confusion. She would always arrive in the Emergency Department confused and drowsy, but once hospitalized would recover to a normal mental state within three days. Her laboratory investigations and CT scan of her brain were normal and the doctors were puzzled by her recurring, spontaneously resolving delirium. She had no family in town but was always accompanied during her hospitalization by a helpful friend. On the fifth admission it was discovered that she had benzodiazepines (drugs in the same class as Valium) in her urine. This was odd, since she was not prescribed any medications in this class. The social worker arranged that she be discharged to her home to be supported by her friend. However, the social worker soon received a frantic call from the patient saying that the “friend” was holding her hostage. Police were called and the patient was liberated, but not without having lost life her savings, which had been stolen from her bank account. This victimization of an elderly person, Elder Abuse, is not rare and calls to mind article 4 of the Universal Declaration of Human Rights. While the outcome of this case has yet to be determined as it is still in the court system, sadly this is not an isolated case.
There are many forms of elder abuse, defined by the World Health Organization (WHO) as “a single, or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust which causes harm or distress to an older person”
Elder Abuse is estimated to affect 4-6% of elderly people who live at home and occurs in an even higher proportion of seniors in nursing homes. Elder Abuse takes many forms, as shown below in a graph by Bond et al, but financial victimization, as in the case presented by Dr. Boseovski is common, accounting for almost a third of reported cases.
Dr. Boseovski reviewed the tools to help health care workers to identify those at risk of Elder Abuse, such as the EASI questionnaire, published by Yaffe et al. Yaffe MJ, Wolfson C, Lithwick M, Weiss D. Development and validation of a tool to improve physician identification of elder abuse. Journal of Elder Abuse and Neglect 2008; 20(3): 276-300 (below). While tools such as this questionnaire may be easy, they are not very sensitive.
Sensitivity and Specificity fo the EASI Questionaire for Elder Abuse
Interestingly, the College of Physicians and Surgeons of Ontario (CPSO) does not mandate that physicians report elder abuse, unless it occurs in a retirement home or nursing home. The advice from Dr. Boseovski? Have an index of suspicion and engage the social workers! Be prepared to report suspected Elder Abuse, whether to the police or Crime Stoppers, which has the advantage of anonymity. The police deal with cases of Elder Abuse through their Vulnerable Sectors Department, staffed by detectives with special expertise in these issues. The key to identifying elder abuse is awareness. Awareness of the occurrence of Elder Abuse and perhaps equally important, awareness of the universal nature of human rights, which remind us that dignity does not have an expiration date. The United Nations agrees and has designated June 5th as World Elder Abuse Awareness Day.
The third of the cases reminded me of my role as a physician in fostering human dignity in my patients. Dr. Ingrid Harle, a surgeon and family medicine physician who is a member of the Department in the Division of Palliative Care, presented an inspirational and emotionally compelling Medical Grand Rounds on fostering human dignity.
Her talk reminded me of clause 2 of Article 21 in the Universal Declaration of Human Rights.
Dr. Harle described a Dignity Model, which highlights how dying patients may experience a waning of their dignity. She challenged physicians to think about patient dignity and engage the patient as a “whole” person in ways that maintain and enhance their dignity; see the quote from the late Anatole Broyard at the beginning of this blog. In a cross sectional cohort study of 213 terminally ill cancer patients Chochinov HM reported that 46% had some dignity concerns. The predictors of feeling a loss of dignity were deterioration in one’s appearance and a sense of being a burden to others (Chochinov H, Hack T et al. Lancet 2002). The loss of dignity promotes hopelessness which Dr. Harle reviewed as a major risk factor forsuicidal ideation, in fact a more powerful motivator for suicide than depression (Breitbart et al. JAMA 2000; Chochinov HM et al. Psychosomatics 1998)
If we dehumanize patients into being ‘a case of’ we can certainly diminish their dignity. Can proper care do the opposite and increase patient dignity? According to Dr. Harle, the answer to this question is a definite yes. Dignity Conserving Therapy developed by Chochinov and colleagues, has the physician and other team members pose questions to the patient that offer them the opportunity to address aspects of their life that they feel were most important or most meaningful. For example, one can ask the patient,
Tell me a little bit about your life history.
- What are the most important roles you have played in life?
- What are you most proud of? What are your most important accomplishments?
- When did you feel most alive?
- What things in your life do you want others to remember?
What things do you feel need to be said?
What are your grief-related issues? How would you like them addressed?
Are there specific things you want your family to know or remember about you?
- Are there words or instructions you would like to offer your family to help prepare them for the future?
- What are your hopes and dreams for your loved ones?
- Are there particular things that you feel still need to be said to your loved ones? Or things you would like to say again?
- How do you wish to comfort your loved ones while you are dying? After you are gone?
What have you learned about life that you would want to pass along to others? What are words of advice or guidance you would like to pass on to…?
Are there other things you would like included in this permanent record?
Dr. Harle described, to a progressively more tearful audience, how Dignity Conserving Therapy involved 1-2 hour long sessions that were recorded, transcribed, edited, and then returned to the patient. This tangible product – a legacy; something permanent to be left behind – could then be bequeathed to a family member.
The pioneering work of Chochinov in this area was reviewed (Chochinov HM et al. J Clin Oncol 2005). They assessed the impact of Dignity Therapy in 100 terminally ill patients and found a 91% satisfaction rate with 76% reporting a heightened sense of dignity. Post intervention measures of suffering showed significant improvement (p= 0.023) and there was a significant reduction in depressive symptoms. Dignity therapy also helped the family with 78% reporting that the legacy document created during the intervention helped them during their time of grief. Thus, Dignity Therapy is a non-faith-based intervention that empowers and honours the dying patient and reduces suffering and distress at end of life.
One tool that I learned as an intern at the Royal Columbian Hospital in the intensive care unit was to have each family post pictures of their loved one in healthier happier times over the bedside. These images were a powerful reminder about the person you were caring for and served as an antidote for the dehumanizing effects of ventilators, balloon pumps and chest tubes.
So thank you to Anne Scott and Drs. Boseovski and Harle for reminding me that every patient interaction should include a dose of Dignity Therapy.