My first experience of being present at someone’s death was in 1985 in Brazil. A friend called to say that her sister was being taken off intravenous fluids and was expected to die after a series of strokes which left her unable to move or talk.
I raced to my friend’s side in her hometown over 200 miles away, wondering if I would arrive in time. We ended up spending the next four days watching her sister die slowly at home surrounded by family, friends and neighbors both young and old. Someone was always present to take care of the “patient’s” every need — a mouthful of soup when able to eat, a spoonful of water, a clean bed and change of clothes after getting washed up, a rosary prayed together, a gentle fanning gesture to provide some cool air and to keep the flies away. Someone was always around to care for those of us who came from far and near — providing a bed to rest on, a shower for cooling off, coffee to drink and rice and beans to eat as we told stories and kept vigil.
For days we anticipated that every breath would be her last and even prayed that it would be. I watched as her eyes seemed to dry up and lose their gleam. She became totally unresponsive, unable to eat or drink. At that time I knew nothing about Cheyne-Stokes respirations, apnea, mottling or dehydration. I knew even less about pain medications, artificial nutrition and hydration, ventilators, hospice or advance directives. What I saw in that room, though, has stayed with me. While there were no fancy procedures or high-tech machines, there was love, caring, prayer, stories, food and a recognition that this person’s time on earth was coming to a close and while everyone was sad, it was right to let her go.
Change time frames, countries, conditions and roles. It is now almost 20 years later and I work as a certified chaplain in both a hospital and nursing home for a small rural health system. We have just initiated Mercy Suite — a set of rooms at the hospital where families can have some home-like amenities in one room while they keep vigil for their dying loved one whom they can see or visit through the inner doorway connecting the two rooms. These rooms become sacred space as families and friends gather with staff to provide end-of-life care for their loved one. It is a very different setting from the hustle and bustle of an ICU, a shared room on the medical-surgical floor or at the nursing home, or the person’s own bedroom at home. Yet, each space can become sacred and the time spent there holy as people accompany the one going home.
After watching this process more intently as a chaplain, there are a few things I have observed.
One is never too young or too old, but one may become too incapacitated to talk with family and other significant people in our lives about our values and wishes for health care and related subjects. These values and wishes can be expressed in an advance directive such as a health-care proxy, a living will, a do-not-resuscitate order or a donor pledge card for organ and tissue donation or to an anatomical gift program. These are things I have talked about with people in their 90s and have seen families agonize over for people much younger who never got around to discussing these issues and now are unable to do so. It is a gift to those we love to have this conversation and to get things in writing since the unforeseen can happen at any time to anyone. End-of-life care can be less of a burden when it is done honoring known wishes and values.
I have worked with families who faced a very difficult decision about putting a person on a ventilator and have chosen not to do this because they wanted to respect their loved one’s wishes. I have also worked with families who made the agonizing decision to take someone off the ventilator once they determined that the person would not want to live like that and did not seem to have a chance to get better. While neither is an easy decision, the second seems to carry more guilt and weigh more heavily on the hearts of those who want to do the loving thing but do not want to “play God.” Respirators, feeding tubes, dialysis, chemo and radiation, antibiotics, etc., all have their proper place and time to be used. The choice to use these or to stop their use needs to be considered prayerfully and courageously in a faith context which keeps in perspective future possibilities — both here and in eternity.
One never knows when God will call our loved one home. I have seen families keep vigil at a bedside thinking someone would die at any minute only to have that person get well again and carry on with life. There have also been times when family members walked away thinking a person would probably live much longer only to be called back to their bedside in a matter of moments because they died. Sometimes people feel guilty when they reach a point where they long for their loved one to die, especially if their suffering has been intense. Many times long vigils allow for something to happen among those waiting that would not happen if the death came sooner. Family members arrive from a distance and say their goodbyes; long-standing enmities are put to rest; unknown stories are shared and well-loved stories are retold for the umpteenth time. Healing can happen in many ways for many people if they are open to letting God call their loved one home when the time is right for everyone. It is important to give young and old, those near and far, white sheep and black sheep of the family a chance to be a part of this healing time.
In the end I was present when my friend’s sister died, but my friend had left the house for a short time. When she returned we washed the body, dressed her sister in a simple outfit and placed her in a plain wooden coffin in the front room. We kept vigil while more people came, and the next day prayed at home and accompanied her to the cemetery.
In the Gospel of John, Jesus describes his mission saying, “I have come that you may have life and have it to the full.” Chaplains, social workers, nurses, doctors, pastors, hospice workers and numerous others are available to advocate for and to walk with those involved at the end of one life and the beginning of a new one. Together with families, friends and the dear neighbor we can create sacred times and places that are life-giving now, and at the hour of a loved one’s death.
Sister Hollis is a chaplain at St. James Mercy Hospital in Hornell.