Death is the great equalizer. Regardless of zip code, area code, bank account, credentials, or occupation, we each recognize intuitively that at some point that final moment will arrive.
Newspapers seemingly have a boilerplate for the obituaries: “Mr. Smith died at home after a courageous battle with lung cancer. He passed away peacefully surrounded by his loving spouse of sixty years, adoring children, and grandchildren.”
Not now.
Today, dying alone is a reality for patients in the hospital with COVID-19.
Orders to stay at home can be agonizing, especially for families with a loved one dying in intensive care units often kept sedated and on a ventilator, unable to speak. Because of the high risk of infection, some medical centers prohibit spouses and sons and daughters, brothers and sisters, and children from being at the bedside.
Except for the extraordinary caring and compassionate medical staff, the patient is alone.
As I express in my book Farewell: Vital End-of-Life Questions with Candid Answers, there is something about the dying process that ends in death that is riveted into the deepest recesses of our brains and souls—those of us left behind. The events of death (especially a sudden and tragic and clearly unexpected death from a hidden virus) are particularly horrifying.
As a medical oncologist and a hospice and palliative medicine physician, I can vividly recall the deaths of many patients. And there is clear recollection of the importance of the death vigil. The aged farmer or some other professional has quietly lapsed into a coma. Holding his hand is that faithful partner, and around the bedside is the assortment of sons and daughters and other members of the clan.
The tearful glance, the vacant stare, the unspoken secrets of the family are put on vivid display during these sacred moments. And there are often humorous anecdotes about the fishing trip that did not work out so well or some late night “misadventures,” which will only be shared with the patient and a few close friends in those closing moments.
Not now.
For many families the death vigil and the dying process is a time to connect, to express remorse and regret as well as gratitude. It’s an opportunity for the prodigal son to return, for the banished daughter to come home with the new baby, for the sister to apologize, and brother to mend fences.
This is the time to close the loop and move on. And it’s also a time where the clergy are available to act as a GPS with the family and patient during that final journey if they so choose.
Not now.
For many patients in the time of COVID-19, these opportunities are crushed. Because of the palpable and legitimate fears of spreading a deadly viral infection, in some medical centers and nursing homes, families do not have the opportunity for that final kiss, that warm handshake, that private conversation, a whispered “I love you.”
In some of these circumstances the clergy may play a powerful role to listen to the family outside of the hospital or in a secure environment and then, per hospital policy, go to the bedside and share those last narratives with the patient.
This is hardly ideal and can be a gut-wrenching experience as the family is locked out of this sacred space. Some hospitals have utilized a telephone system where the clergy at the bedside can listen to the family and relate their final thoughts to the patient. Again, this is an electronic attempt to connect but the void remains.
Under some circumstances and among some institutions, a member of the staff may accompany one or at the most two family members to the bedside, being mindful of all the precautions and the obvious risks involved. The time is carefully monitored and limited to thirty to sixty minutes. Again, hardly ideal but certainly one approach to bridge that gap between dying and the next chapter.
Here is my advice if you have a loved one in ICU or critical care with COVID-19. Please be mindful of spreading the virus to other family members and throughout the community. At the same time, we want to honor the patient who may die alone.
Identify the decision-maker in the medical environment. This may be the physician, a healthcare provider, a palliative medicine specialist, or an institution’s administrator. If there is some flexibility in hospital policy, request that a family member or two be given limited visitation in person with appropriate protective gear.
Whoever the designated family member is, take video messages on a smartphone from others. Bring written messages, cards to leave behind, and put some thought into what you want to say because your time at the bedside may be quite limited.
If the healthcare institution will not allow in-person visits, ask for a speakerphone to be placed by the patient, if the patient is awake and aware. Each family member can then have an opportunity to share a quiet moment of reflection. Even if the patient is on a ventilator and unable to speak, hearing well wishes from family and friends may be welcome.
In troubled times like these, we all turn to our own religious or spiritual advisors to guide us, to our belief systems and coping mechanisms. In the best of situations, the bedside vigil with a dying loved one is heart-wrenching. But these are not the best of situations. We can only make the best of tough times and be comforted that our loved one, perhaps alone, knows we have made every effort.
In my next blog I address the role of the palliative medicine physician in assisting families in this unprecedented age of COVID-19.