Beginning with the first half of the 20th century, with the development of modern healthcare, western society’s attitudes towards death and dying have changed. This is described well in an article in The Journal of Advanced Nursing: “The ultimate professionalization of death…removed western society away from the process of death… and traditional rituals truncated and therefore the expression of grief denied…Analysis of the facts confirmed by the model reveals that contemporary society has endangered health by being unable to discuss death.”
Since my mother’s diagnosis with lung cancer over a year ago, I have been an active participant in Tweetchats discussing end of life care [#eolchat and #hpm (hospice and palliative medicine)], death with dignity (#dwdchat), and some disease specific chats dealing with breast cancer (#bcsm) and lung cancer (#lcsm). Participants span the healthcare ecosystem including patients, caregivers, physicians, nurses, educators, and therapists. One of the themes in these chats is that patients are being denied the emotional outlets to fully discuss their diseases in ways that free them of stigmas, isolation, and the ability to be treated as whole people and not victims. It is often the fear and social ineptness of others which create communication barriers among loved ones. Patients are admired for being ‘fighters’ and thus are sometimes denied the opportunity to complain about pain or fear. We have discussed what happens to your Facebook or Twitter accounts when you die. Another discussion last night online focused on whether children should be permitted to attend funerals. Death must be reinserted into the language of health and living. It should be considered a part of the much overused term ‘circle of life’ (which in the absence of death is not a circle at all). It was suggested that death and dying be incorporated into school health programs much as human sexuality is. This could certainly be controversial, and there are many analogies to be drawn as both straddle the medical and religious realms. But I digress. I even had the extreme pleasure of meeting a pediatric palliative care physician last night. Social media is a place where patients, professionals, and others converge in a stress-free, lively, and inspiring forum to tackle these sensitive issues head on. The time flies. Healthcare is improving the social media experience and vice versa. Social media is becoming a meeting place with specific online patient communities, as well as closed physician communities such as Doximity. It is my hope that physicians increase their presence in social media and interact as patient advocates (not giving specific medical advice or socializing with patients).
It is now mandated that advanced directives (living will) to be discussed upon admission to a hospital. Most patients are presented with a piece of paper and given just a few minutes, without much discussion, of completing the form in order to comply with the law. There are now apps where one can complete their advance care plan documents. One is called ‘My Health Care Wishes.’ Another app called ‘Leaving Well’ which organizes not only advance directives but insurance data and funeral plans, while furnishes information on the dying process, palliative care, financial issues, wills, and more.
In addition, there are websites for patients and families such as Better Ending, and My Directives. State governments have websites addressing advance directives. One site is an end of life/palliative care educational resource center for healthcare professionals. There have been more than a few poignant articles about people in the healthcare ecosystem with difficult end of life choices to make. If it is difficult for them, it is certainly more daunting for ‘outsiders.’ It is my hope that social media and digital and mobile technologies serve to help us improve the quality of our dying and death as well as our lives.