The only reason that it’s scary getting old
Is people treat you like you’re too big to hold
And you still feel just like a kid…
That is why I reach for you so much
I think I’m drowning, until we touch
Life is an ocean we fall in
When you hold me I can swim
In this hospital the beds are made of steel
Metal instruments are all some people feel
What you need is something soft against your skin…
That is why you reach for me so much
You feel you’re drowning until we touch
Death is an ocean we fall in
I will hold you while you swim
–Stuart Davis “Swim”
I love this song for the picture it paints of mercy. That picture is always with me when I visit people living with terminal illness.
Over the past several weeks, the hospice I’ve served for fourteen years as a chaplain and bereavement coordinator has taken steps to protect our patients from the spread of COVID-19. These steps are also in place to protect our staff and the community at large from the spread of this virus. Among these measures is the suspension of all volunteer visits. Our hospice nurses, aides, social workers, massage therapists and chaplains are still visiting the bedside, bringing comfort in every way to the people we care for. But I have to confess, the heart of hospice beats most resoundingly within our volunteers. Knowing that this heartbeat is muted, even if only temporarily, is sobering.
Hospice is not about dying; it is about living. One mercy of hospice care is the emphasis on increasing comfort and dignity while also palliating pain and the myriad symptoms of terminal conditions. Modern hospice pioneer, Dame Cicely Saunders, identified the term ‘total pain’ to stress that terminal conditions have social, emotional and spiritual facets in addition to their physical ones. Thus, hospice interdisciplinary care teams attend to multifaceted persons, not diagnoses. Some hospice patients, as they experience greater comfort and quality of life, may rally and enjoy a greater quantity of days. For others, the care provided seeps in deeply, bringing peace and the ability to let go at the end of life.
People who are living with terminal conditions are especially vulnerable during this COVID-19 crisis. Their immune systems are compromised for reasons related to diagnoses. But their lives are threatened just as certainly by the dangers of physical and social isolation. With volunteer services on hold, the mercies of human contact are undeniably reduced.
Hospice volunteers hold people as they swim in the ocean of life. Some people living with a terminal condition have no family or friends visiting them. For them, a hospice volunteer may be the one person in their life whose only purpose is to hold them, to sit with, talk with, cry with, watch television with, walk hallways with, read for, sing for, listen to, or simply bring a friendly familiar face to. Most volunteers I know are skilled in several, if not all these simple mercies. But I also know volunteers who feel strongly that they have only one act of mercy to offer. It is enough. For someone living with a terminal condition, one small act of mercy might mean the difference between feeling that they are swimming, instead of drowning, in the ocean of life. At the end of life, a hospice volunteer can, with only one act of mercy, hold someone as they swim in the ocean of death.
I’ve heard from chaplains and bereavement coordinators at other hospices. They also are suspending volunteer activities for the time being. This decision is tricky because the federal government (the largest provider of reimbursement for hospice services) requires that 5% of care provided to hospice patients must be done by volunteers. The more hospice staff visit, the more volunteers must visit. Denise, the volunteer coordinator I am so fortunate to work with, is also concerned that this coronavirus crisis may be too much of a stressor for a few of our volunteers and they may decide not to return when volunteer visits resume. This situation also will present another challenge. Hospice volunteers require special training, background checks, and screening for tuberculosis. It may take up to a month of preparation before a volunteer is ready to make their first visit with a patient and therefore getting new volunteers is no simple task.
Mercy, in the form of “visiting the sick,” is a hallmark of all the world’s religions. People of faith share the calling (opportunity and responsibility) to be good stewards of their gifts; mercy is one of those gifts. And mercy is not a feeble common thing, like some sort of limp handshake. Mercy is a powerful challenge to the forces of sickness and death, among other human afflictions.
This world will need a new wave of hospice volunteers. While we wait to see what this COVID-19 crisis produces in our world, we need to be preparing. Is there a simple act of mercy that you can offer to those who are living with terminal conditions? Are you able to listen to someone share the story of a lifetime? Do you enjoy singing for others? Do you have the courage to sit quietly at the bedside when death comes near the living? Would you mind watching the ballgame with a fellow [insert name of your home team] fan? If so, call a local hospice agency and ask to talk with the volunteer coordinator. Let them know that you are calling now because you want to be ready, when volunteer visits resume, to find your place in their picture of mercy.
Sometimes there is nothing we can do to prevent or end a crisis. In those times, we can look ahead to what will be needed next. If volunteering to visit people living with terminal illness is not your calling, begin considering what your calling will be. Whatever happens in the wake of COVID-19, all our mercies will be needed.
Stuart Davis very graciously gave permission for the use of his lyrics quoted at the beginning of this post. He has the author’s deepest appreciation. This link will take you to Stuart Davis’ website and page where you can find the full lyrics and download/streaming opportunities for his song “Swim”.
What “acts of mercy,” as Holdsworth describes them, do you have to offer, not just to those in hospice, but to anyone who’s suffering or lonely? Are there ways these acts of mercy can be adapted to be possible during a time of social distancing? I challenge you to extend at least one act of mercy to another person in the coming week.
What are ways we can still connect with individuals in hospice and all those who are at high risk during the COVID-19 lockdown? Contact a local hospice center and get the name of someone to send notes to? Offer some time to talk with people via video chat or phone? Create a list of at least five things and commit to acting on at least two of them.
Daryn Holdsworth is an ordained minister of the ELCA, rostered with the Central States Synod, called to serve Pathways Hospice & Palliative Care. After beginning his career in congregational ministry, Daryn completed a residency in hospice chaplaincy. He has since worked as a hospice chaplain and bereavement coordinator. In addition to those roles, Daryn is also the coordinator of the Pathways Comfort Singers—a Threshold Choir. These volunteers sing in groups of two to four at the bedside of hospice patients, especially those who are nearing death, bringing words of comfort and peace.
Photo courtesy pxhere.com