Most would agree we are in denial about death in our Western culture. We operate from a reactive rather than a proactive stance when faced with the idea of our own or a loved one’s death. Why are we in denial about an event that we most certainly cannot avoid, a phase of life that everyone eventually must live either consciously or unconsciously? Being in denial doesn’t alter that fact, but it most assuredly does alter the potential of the dying experience.
When we can find the courage and compassion to talk about dying before it’s too late to do so, we create the potential for a much richer experience, including more appropriate medical care, greater chances of forgiveness, and meaningful exchanges of love and endearment.
We open the door for creativity in the final chapter of life, for our dying loved ones and ourselves to coauthor a new and lasting story of the end of life together.
The gifts of palliative care and hospice support, when introduced along with a terminal diagnosis, can provide relief from the physical symptoms and from the anxiety and emotional strain of false hope in a very unlikely turn of events. The full spectrum of palliative hospice care can be structured and utilized to the maximum benefit of all involved. The journey can be enhanced with environmental changes and scheduled visits, final wishes honored and joys shared, while there is time to do so in full and conscious acceptance.
My (Julie’s) family was fortunate to be immediately referred to hospice support after my dad received a terminal diagnosis, and because of that, he enjoyed many weeks of appropriately scaled care and family support, visits from friends, and an opportunity for him to get ready in every way possible. He had a chance to tell each of those in his close family circle how very special they were to him, and we had a chance to give him our own special messages of lasting love and appreciation. My dad had time to plan his own celebration of life, to make choices about that event. He had time to enjoy meeting with his friends for coffee, the simple pleasures he treasured. He had a chance to be with his wife, my stepmother, and to give her some affectionate care and companionship while she recovered from a serious illness of her own.
Being in the conversation about death while we are still fully living life allows us to shape that experience and learn from it. It allows us to teach others what’s important in our lives (and therefore in theirs too). Existential pain may be an inevitable part of dying unless we die tragically and suddenly. That pain does not respond to medical intervention. It can be surmounted with compassionate and holistic care, and these are benefits palliative care and hospice offers.
Discussions about our preferences at the end of life often begin then when life is ending. And many patients and families are not prepared to accept the end’s imminent arrival, far too many. They may be falsely encouraged to “fight” or intervene with every means available, trying in vain to beat the disease until it’s too late to plan, to talk, to forgive, to live holistically, and with acceptance the last chapter of life. Some would argue that those who encourage such dogged interventions are being quite selfish; they are not allowing their dying loved one (or patient) to embrace with a whole mind and heart the experience of death. When we do this out of our own desperation and fear of loss and death, we rob our dying loved ones and ourselves of the richness of death done well.
Western medicine has given us so much hope in our lifetimes, hope for medicinal cures, and life-elongating surgical interventions of miraculous proportions. Who could have imagined these things in our grandparents’ early days? They were the stuff of science fiction and scientific research dreamers. Somehow, we came through this era of Great Medical Discovery with the idea that death is the inability to cure, a medical failure, rather than a normal and natural sequence of life events.
Mortality is a gift. Dying is also a gift. Imagine how life would be different if no one died. If pain and sickness and frailty and system failure were somehow tolerated indefinitely, would that be desirable? Would that be a quality of life worth extending?
It’s difficult to accept and to talk about dying, but it is important that we do so as individuals, as families, as communities, as the human race. Dying is living till the end of life. It won’t go away when we ignore it. The sooner we start the conversation and the more comfortable we can become with it, the more options we have about how to live it and how to share it. Not talking is not preparing. Not preparing is not creating quality choices.
In our discussions, the idea for a professional online discussion group was born. Victoria created the End-of-Life Discussion Group for Professionals on LinkedIn. It is a group for professionals to share with one another on the topic of death, dying, and end of life, whether from a personal perspective or a professional one.
We can all learn from one another by sharing stories, articles, blog posts, research, and discussions. But often what is missing is the ability to “vent” the difficulties professionals face in their role working with individuals who are dying, diagnosed with chronic health conditions, or a progressive health issue or illness.
It would be wonderful if meaningful dialogue can occur, and professionals, whether from the field of social work, mental health, psychology, psychiatry, clergy, trauma orientation, nursing, physicians, etc., are able to connect with other professionals in the helping and medical and health care fields.
Education, awareness, and advocacy are needed. All professionals who work with the chronically ill, those diagnosed with a progressive and degenerative illness, with seniors, in hospice or palliative care, medical settings, or health care need to receive training and education in this area; I (Victoria) have found it is sorely lacking. The first awareness and education piece should come while a person is in university or two-year certificate/degree program, while they are being taught in their respective discipline. Next, it should take place in the work environment with regular training occurring along with support offered.
Professionals can burn out, and self-care is needed. Good supervision is needed along with support groups or a support system among colleagues that allows professionals to vent and share with one another.
I (Victoria) was recently involved with researching and designing a peer discussion group in my role as a case manager at my place of employment. This group is for frontline staff only with no management present without invitation. The group has many uses, one of which is for colleagues to support one another, learn from one another, and share information and expertise.
This article was previously published as a chapter in the book Journey’s End: Death, Dying, and the End of Life in 2018, an anthology of perspectives coauthored and compiled by Victoria Brewster, MSW, and Julie Saeger Nierenberg, MA Ed.