Monica Do Coutto Monni is the executive director of Near North Palliative Care Network, a non-profit organization which provides one-stop palliative care, bereavement and grief, and end-of-life free volunteer-based services and training in Northern Ontario. We had a chance to talk with Monica about how our culture views end-of-life issues and why quality hospice and palliative care are becoming more important as the population ages.
Tell us a bit about your background. Why did you decide to head up the Near North Palliative Care Network?
I joined Near North Palliative Care Network in 2009 as a volunteer. It was meant to be a post-retirement activity, but I fell in love with the central importance of providing community visiting volunteer hospice palliative care, caregiver respite and grief support, and end-of-life training and education to community, caregivers, and volunteers completely free of charge. The organization needed experienced professionals committed to NNPCN, and I gradually got more involved as board director, bereavement lead, volunteer coordinator before becoming executive director.
Most people are familiar with the five stages of grief. But in your experience, does the bereavement process usually fit neatly into that paradigm?
The five stages of grief proposed by Elisabeth Kübler-Ross in her 1969 book On Death and Dying are useful to understand universal aspects of grief that are easily recognized across cultures. Each individual goes through grief in their own unique way. There is no such thing as one size fits all, although most people in grief recognize the main landmarks of grief stages. There is no foreseeable order in the process of grieving. Grief support is the art of validating the experience of the client. Only the client can teach their grief facilitator about what they are experiencing.
What do bereaved people typically need that isn't often addressed by their network of family and friends?
Bereaved people need a safe space where their tears are welcome and where they can share their unique experience and feel unconditionally validated. Bereaved people need to be heard and actively listened to, but unfortunately, it is rare to find family and friends who feel ready and willing to talk about death. We live in a death-denial society and talking about death, grief, and loss is still taboo.
It is important to understand that there is no timeframe for the grief process. Grief stays with us for the rest of our lives. As long as you remember your loved ones, you will miss them. This is only natural. However, as you integrate the life of your loved ones into yours, the intense feelings of grief and unsettling set of physical, emotional, spiritual, and cognitive experiences people normally go through at the beginning of the process gradually heal. In the end, it becomes bittersweet.
How has the concept of hospice care evolved from the 20th century to today?
The word “hospice” derives from the Latin word hospes, which means both “guest” and “host.” Since the 11th century, the concept of hospice was adopted by the Roman Catholic tradition to refer to a place of hospitality for the sick and dying as well as for travelers and pilgrims. The first of such hospices are believed to have been established during the Crusades. Hospices were widespread in the Middle Ages, but diminished as religious orders became dispersed.
The term was first applied to specialized care for dying patients by physician Dame Cicely Saunders, who began her work with the terminally ill in 1948 and eventually went on to create the first modern hospice—St. Christopher’s Hospice—in a residential suburb of London.
Since then, most countries created laws, regulations, and government budgets for hospice care. The private industry nowadays also represents an important share of the market in countries like the U.S. In Canada, hospice palliative care has developed to meet local needs. It came about as a result of the rapid expansion of cancer treatment programs in the 1970s whereby treatment was defined as either curative or palliative. The movement began with the creation of palliative care units in a hospital setting. The number of seniors aged 65 and over is projected to more than double from 1.9 million, or 14.2 per cent of the population in 2011, to 4.2 million, or 23.6 per cent, by 2036. By 2017, for the first time seniors will account for a larger share of the population than children aged 0–14. In simple words, one-third of the current population of Canada will age and die in the next 25 years.
It is projected that 2/3 of people who die will have two or more chronic diseases after months and years of what is called "vulnerable frailty." In order for the system to be sustainable, we need to support these patients in place (in their homes), have spaces in long-term care facilities, or have residential hospice beds. To support caregivers and patients, we need to build a strong volunteer base and empower the community to help themselves through training. The costs are much lower and the outcome much better. We are also anticipating a significant increase in deaths. National figures estimate that there will be 40% more deaths each year by 2020.
The Hospice Palliative Care Provincial Steering Committee has recommended to the Ministry of Health and Long-term Care a population-based capacity planning formula for where these dying patients should be served: 60% in-home, 15% Long-term Care homes and Residential hospices, and 25% hospital palliative care units.
As the Visiting Hospice of our community, NNPCN is in the unique position of giving respite and psychosocial support to 100% of our population wherever the palliative care clients and their caregivers need us: at home, in a long-term care facility, in residential hospice, or in hospital. Our major concern is the 60% of the population dying at home, since they are the ones needing services the most.
We need reassurance that there are funds for services in the community where a vast majority of our citizens will die. We are in support of more funding and resources for hospital palliative care, long-term care facilities and health care partners, and also the prospective residential hospice in our community, since each of these services is essential to our population.
Finish this sentence: "Believe it or not, the most important skill that a hospice volunteer should have is..."
Believe it or not, the most important skill that a hospice volunteer should have is the right attitude. Many skilled and experienced professionals want to volunteer after retirement but have difficulty to adapt to a humble, self-giving, and collaborative attitude.
The NNPCN organizational culture is pioneering the concept that we should break with the old worldview of individualism and competition and strive to put a human face back on the industry. What we seek is a collaborative organizational culture based on the power of the team and working from a personal "Happy Place," that takes into account a central human dimension neglected by the old paradigm of “free competition:” the fragility and sensitiveness of the human condition.
We deal with human beings at their most vulnerable moment: death. This is as human and fragile as one can get, and the most human experience we can go through. There is no space for “business as usual” in this situation. To give our clients what they need, first we must live a culture of solidarity and mutual support among board members, staff and volunteers. Volunteers who come from a competitive professional or personal environment first need to unlearn the notion of success at all costs and the “I, me and myself” attitude.
At NNPCN, we encourage everyone to leave competitiveness at the entrance door of our building. This is not always possible in real life. I have been working with our organizational culture for the last three years and am hopeful that soon we will consolidate a noticeably healthy and collaborative organizational culture across the NNPCN that will inspire, encourage and role model health care partners to adopt similar healthy practices. I see this passing mostly through a tailored process of recruitment and selection of individuals with a healthy collaborative attitude, and then investing in their well-being and quality of life through training, education, and healthy organizational practices.
Medical needs aside, how should a hospice volunteer care for a person with a terminal illness differently that if he or she were caring for a healthy elderly person at a senior care facility?
The difference between a community visiting hospice volunteer and volunteers in a senior care facility is visiting hospice volunteers go to the client and follow the client when the client is transferred from home to hospital, long-term care, and back home, for example. They become that familiar face that elicits a sense of safety in clients and caregivers.
Both kinds of volunteers deal with clients in many different stages of the end of life. NNPCN volunteers are highly trained to deal with palliative care and grief, and not all senior care facilities have these kinds of volunteers. In general, senior care volunteers are trained to deal with relatively healthy elderly persons who are still independent and mobile. The reality is that clients are aging, becoming palliative, and dying in senior care facilities. These facilities are adapting to this reality. Currently, NNPCN volunteers are in high demand and we are establishing collaborative and fruitful alliances with many long-term care and independent living facilities.
If the loved one of a hospice patient were to say to you, "I refuse to help him/her accept the fact that he/she is going to die - because he/she will then just stop fighting," how might you respond?
If the client is diagnosed with a terminal illness with a prognosis of less than 2 months, I might respond: "He/She already knows he/she is dying. We can help him/her make every minute count now in terms of meaning and physical, emotional, and cognitive comfort."
We are all mortals, and we are all going to die. This is the reality. We prepare so well for the beginning of our lives with baby showers, celebrations, all kinds of training books and courses for parents. We strive to make every baby comfortable, happy, and safe in every detail. Why should it be different at the end of life?
Finally, do you have any suggestions for how people can broach the subject of end-of-life care with their elderly loved ones?
There are many ways to do this. The most efficient way is to break the silence. Learn about aging, end of life, and death. Normalize it in your conversations. We are not ready and prepared for the end of our lives as a society because we don't want to talk about it. Every person who breaks the taboo contributes to the advancement of end-of-life care.