Providing Dignity Affirming Care: Acknowledging Human Dignity
Larry Worthen
This article first appeared in the August 2023 issue of FOCUS.
One of the key themes of the Dying with Christ – Living with Hope video series is the question of human dignity. For the Christian, human dignity comes from God and is intrinsic to every human being regardless of their specific attributes. (See Psalm 8:3-6 and Psalm 139:13-14.) Yet, there is a strong perception in Canadian society that health, age, ability, or other personal characteristics or accomplishments affect our dignity. Many people in Canadian society react to the loss or impairment of these attributes with the desire to “die with dignity” as if the act of dying somehow preserves their personal characteristics before they are lost to illness. This begs the question: Is dignity earned through accomplishments or acquisition or is dignity innate and unassailable? It is an important question because Canadian law currently allows people who feel that they have lost their dignity due to a grievous illness, disease or disability to have a physician or nurse practitioner end their lives. Loss of dignity is reported as the source of suffering for 54.3% of the people who chose MAiD in Canada in 2021. (Government of Canada. Third annual report on Medical Assistance in Dying in Canada 2021. https://www.canada.ca/en/health-canada/services/publications/health-system-services/annual-report-medical-assistance-dying-2021.html) Many persons with chronic illness or disabilities live long and fruitful lives under similar conditions as people who have applied for and received MAiD. They experience their own dignity within the limitations of their chronic illness or disability. Yet one person who feels that they have lost their dignity can be killed by a physician or nurse practitioner while another person must be supported because they feel that they have their dignity. This irrational outcome is the product of a confused Canadian legal system and has been the source of much consternation and distress for advocates for disability rights in this country. Their question (put bluntly) is, what is the incentive for the system to care for them in their vulnerability since if they get discouraged or depressed and lose the sense of their own dignity and as a result give up, they will simply become candidates for MAiD. This discussion, as disturbing and awful as it is, brings up another point: if dignity is a subjective feeling that can be lost, can it also be restored?
For an answer to this question, we turned to a palliative care expert Dr. Harvey Max Chochinov. (Dr. Harvey Max Chochinov is a Senior Scientist, CancerCare Manitoba Research Institute, CancerCare Manitoba and Co-Founder of the Canadian Virtual Hospice.) I studied his 2011 book, Dignity Therapy: Final Words for Final Days. (Chochinov, Harvey Max. Dignity Therapy: Final Words for Final Days. [Oxford University Press, 2011, Kindle Edition]) In chapter one of his book, Dr. Chochinov describes his “Model of Dignity in the Terminally Ill”, (Chochinov, 27-24) which is based on patient data from a study conducted by his team. The model pioneered by Dr. Chochinov takes the position that there are three primary elements that influence patient dignity. The patient’s perception of their dignity can be affected by Illness-Related Concerns – which are factors that come from the illness itself, such as physical and psychological responses. The patient’s perception of their dignity can be positively impacted by what he calls the “Dignity-Conserving Repertoire”. These sets of factors were observed as influencing the patient’s sense of their dignity. These factors are often found within the patient’s psychological makeup, personal background, and life experiences. Finally, external factors in the patient’s social environment also influence the patient’s sense of their own dignity. Dr. Chochinov refers to these factors as the “Social Dignity Inventory”.
The key is listening to the patient to determine the nature of the suffering and then brainstorming strategies with the patient to improve their internal feelings of their own dignity.
After discussing each of the factors that influence patient dignity, he identifies dignity-related questions and therapeutic interventions for each factor. These charts are found on pages 38 to 40 of his book. For instance, when a patient experiences the fear of being a burden, Dr. Chochinov recommends having the patient discuss these fears with their loved ones. If the patient is experiencing medical uncertainty, he recommends providing accurate, understandable information and strategies to deal with possible future crises. The key is listening to the patient to determine the nature of the suffering and then brainstorming strategies with the patient to improve their internal feelings of their own dignity. Dr. Chochinov’s thesis is that a patient’s sense of dignity has clearly defined sources and that specific questions and therapeutic interventions can enhance a patient’s sense of their dignity.
Dr. Chochinov provides simple but effective questions that could be used by medical professionals, clergy and family members to explore the person’s sense of their own dignity at this stage of their illness or disability. He calls this the “Dignity Conserving Repertoire”. If continuity of self is a concern, the recommended question is “are there things about you that this disease does not affect?” If hopefulness is a concern the question is “What is still possible?” To maintain a sense of pride, Dr. Chochinov suggests “What about you or your life are you most proud of? These questions can be followed up by interventions like chronicling one’s life by writing or by audio tape or looking at pictures of the past. All of these questions and interventions have the potential to unlock forces within the person to help them capture a sense of self they thought was gone in light of the overwhelming trauma of illness or disability.
He also lists dignity conserving practices like living in the moment, maintaining normalcy, and finding spiritual comfort. The Social Dignity Inventory includes ways that others can impact the sense of dignity of the person. This includes the maintenance of privacy boundaries, provision of social support, care given respectfully and in a personal manner, reassurance that the person is not a burden to others and preparation for the aftermath of the dying process.
While I am not a medical professional what Dr. Chochinov proposes rings true from my own experience in pastoral care in my role as a son and as a deacon. My father passed away in 2009 from squamous cell cancer on the side of his head. He received palliative care for almost two years. At one point his faith became eroded from his prolonged experience of helplessness. He told his palliative care physician that he wanted the doctor to help him die.
Later, when I was alone with my father, I asked him why he wanted to die. His words made me sad. He said “because, I can’t give anything to anybody anymore.” What followed after that conversation was a concerted effort to help my father see that this was a time for him to allow us to do things for him. We also took every opportunity to increase activity outside the hospital and to demonstrate that he was still giving to others even in his weakened state. When people are vulnerable like this, they need care, support and encouragement to see their dignity when it gets obscured by trauma, fear, and the challenges of navigating the health care system. Christ identifies with people in these circumstances and tells us “Whatever you do for these my brothers and sisters you do it to me.”
I have seen the same level of vulnerability in my pastoral work. A parishioner and friend who was dying of esophageal cancer had a major crisis when he fell and could not get back to bed. His wife was forced to call for an ambulance and for 30 minutes my friend lay on the floor contemplating his mortality and his complete dependence on others and God. He called me later on Zoom and was very distraught. After my questions, it became clear that he felt that he was a burden to his wife. Fear of being a burden is listed as a source of suffering by a third of patients who choose MAiD. In a previous conversation, the parishioner’s wife had assured him that she did not see him as a burden. I helped him see that his current emotional state was a result of a completely understandable grief response. But I was left with a chilling thought after this conversation: Had my friend been offered MAiD at that vulnerable moment, he might have accepted it. He would have died without any waiting period and might not have had his family notified. As it happened, he died naturally a few days later after being transferred to hospice. Had he died earlier via euthanasia, his family would have lost those precious last moments with him. My friend was never a burden, but he had a burden his family and friends were willing to help him bear. Every day they were able to join him in bearing that burden was a blessing. What he needed was an emotional transition, not death. Health professionals, clergy, family and friends who encounter people experiencing vulnerabilities need to know that we can have an impact by affirming their dignity.
In reading the charts developed by Dr. Chochinov, I was struck by how much crossover there was with the reasons for suffering that are listed in the annual 2021 MAiD report published by Health Canada. Loss of ability to engage in meaningful activities was cited by 86.3% of people who received MAiD. Inadequate control of pain or concern about it affected 57.6% of people who opted for MAiD. It could be argued that every one of the reasons for suffering listed in the Health Canada MAiD report could be addressed by Dr. Chochinov’s therapeutic interventions.
This is a sobering thought, especially when one considers the lack of essential services which form the backbone of alternatives to euthanasia currently provided in our health care system. Advocates have indicated that there is insufficient access to supports and services for people with disabilities, chronic illnesses, or mental illness, as well as a lack of access to palliative care for those with life-limiting illnesses. Dr. Romayne Gallagher’s September 2020 article for Medical Hypotheses argues that some requests for hastened death due to disease burden and distress are driven by a lack of access to quality palliative care and this amounts to a medical error. Once MAID becomes available in March 2024 for people with mental illnesses, only a three-month waiting period will be required for those wishing to die. The average wait to see a psychiatrist in Canada is six months. The desire to end suffering is met not with care, but with an end to the sufferer.
If these essential interventions are not being regularly offered to patients, then it may be contributing to the dramatic increase in the number of MAiD deaths. Perhaps we can change a patient’s mind about MAiD with more compassionate care. While this is often perceived primarily as the role of health care professionals and chaplains, every person can play an important role in providing care by listening, supporting, and encouraging people experiencing vulnerabilities to see their human dignity. If you have these skills and employ them, you could actually be saving a life. Each person can use Dr Chochinov’s strategies according to their skill and knowledge level. The strategies are accessible to people with no formal training provided they approach the patient with humility, love and a sincere desire to understand and to help.
By acknowledging and affirming the dignity of those with chronic conditions, disability, or life-limiting illness through this method, we can offer a profoundly Christian response to suffering. The government statistics around MAiD paint a sad picture of people whose sense of their own dignity is challenged. By engaging in practical care strategies in response to their experience, we can help affirm their dignity. At some point, all of us will have moments that will challenge our trust in the Lord and our belief in our own dignity. When we are at our most vulnerable, having people around us who are prepared to affirm our dignity will be invaluable.