Editor’s note: This article is written by Curtis Freed, a GARBC-endorsed chaplain. Because it originally appeared in a non-religious publication, the verbiage is not explicitly Christian or ministerial. We have reposted it here because it contains helpful advice, based on sound, Biblical principles, for ministering to people.
Why are we so afraid to talk about death and dying in our society today?
We all come from different backgrounds, cultures, communities, socio-economic status and religions. If there is one thing we all have in common it is that death is inevitable; we will all die someday. Yet death remains the infamous “elephant in the room” that we try to avoid talking about; it’s as if not thinking about it makes it go away.
In America we have created a society in which we believe that death can and should be prevented at all costs by the doctors, hospitals, and medicines that we give our patients. We are led to believe that the medical community has all kind of solutions to treat and cure any disease. The truth of the matter is that regardless of how hard we try, we cannot prevent death. According to Statista, in 2007, 90% of deaths occurred either at home or in an institution (such as a hospital or nursing home), many under a cloud of very difficult circumstances with tough decisions for our loved ones to make for us. 10% of deaths occurred in other locations (such a car accident, war, natural disaster, a victim of crime, a work-related accident or something similar).
I began my journey of becoming an institutional chaplain in 2002. After pastoring two churches (one in Pennsylvania and the other in Michigan), my heart was drawn to serve as either a hospital or hospice chaplain. It seemed that given my strengths, gifts and background, I was able to relate more with the suffering, dying and those who are at a vulnerable time in their lives.
My journey took me into a hospital setting providing spiritual care to patients and their families in both the ICU and a Burn Unit, as well as other areas. In 2013, I made the transition into hospice care. The hospice setting is much different. The time spent with the patient and his or her family has the potential to be much longer as you walk with them during this unique time in their lives, getting to know the patient and family members, usually in the sanctity of their own homes, where you are on their sacred ground.
For the hospice patient, several themes emerge as he or she tries to find meaning in their suffering and dying. Forgiveness is one of the foremost themes: being forgiven by God and being forgiven by others. Another question many folks consider is whether or not their life had meaning; i.e., did they make a difference in this world or achieve the goals they set out to accomplish? Sometimes they express concern they might become a “burden” as the end draws near. The person on hospice often feels sad or frustrated and feel that since they are no longer able to “contribute” in meaningful ways, they no longer have value or purpose in life.
Many times the topic of the afterlife becomes the primary focus.
As I engage with those who are dying, I am often asked questions about heaven and the afterlife. Many times people look to the Bible for answers, so various Scripture passages are shared which give us a “snapshot” of heaven. Although we have only limited knowledge as to what heaven will be like, we can say, based on what the Bible teaches us, that heaven is beyond description and it won’t be boring. It is described as a place of eternal love, joy, peace, happiness, and pleasure; a place where there is no pain, crying, suffering, death, or dying. All the struggles we experienced in this life will be nothing compared to what God has in store for us in heaven.
The dying may ask questions such as, “Why is this happening to me?” or “What did I do to deserve this?” “How will I be remembered?” “Will I be forgotten?” Focusing on the spiritual helps give meaning that so many are seeking. Viktor Frankl, a renowned Austrian psychiatrist who survived three years in several concentration camps during WW2, once wrote in “Man’s Search for Meaning” that “man is not destroyed by suffering; he is destroyed by suffering without meaning.”
But “spirituality” is much broader than a faith or religious belief. Spirituality is best defined in a person’s life by that to which they hold as sacred. It could be related to a person’s religion, but it can also include music, poetry, art, nature, or sacred writings (such as the Bible, or Rabbinic literature, or Catholic or Muslim prayer books).
What one person finds sacred or spiritual in their life, another may not. One doesn’t have to be “religious” to be spiritual. The person who claims to be an atheist is “spiritual;” s/he finds the sacred in their own life (for example, nature). After all, we are not only psychological and physical beings; we are spiritual beings as well. It is the sacred in our lives that gives us meaning and purpose in our suffering.
To illustrate the uniqueness of spirituality in an end of life journey, I would like to share stories about three patients and what each of them found to be spiritual in their own lives as they were nearing death. Names and some details have been altered to protect their identity and situation, however each represents someone with whom I had the privilege of visiting and spending time as they were in the dying process.
Helen. One of the biggest challenges I have faced since becoming a hospice chaplain is working with dementia patients – something very common in the hospice setting. Dementia is a cruel disease. It drains the life out of healthy vibrant, people. From a family’s point of view, their loved one isn’t the same person they want to remember. Thus, a family member/caregiver often does not know what to do with their loved one when they are diagnosed with dementia.
It is a challenge to provide meaning in life to those who have dementia. My approach as a hospice chaplain has been to connect to the spiritual through various means, including reading from the Psalms (especially the 23rd Psalm), reciting the Lord’s Prayer, praying with the patient, playing sacred hymn music, or conversing with the person about their early years. I have found that dementia patients can often recall special memories of their early years of growing up on a farm, the war years, or something similar. Another chaplain told me about one old veteran from World War II who, with severe dementia, was no longer able to communicate verbally. When the chaplain showed him a picture of the American flag on his tablet, he smiled and saluted! It was the only form of communication he could do.
Helen had severe dementia; she was 90 years old and did not talk much. She had been living in an assisted living facility for a couple of years. I usually tried to visit her on a weekly basis. Her family, of course, was saddened and discouraged by the manner in which the disease had taken over Helen’s life. Still, I found her to be very charming and enjoyable.
Each time I visited Helen, I would bring in a music player and play sacred hymn music for her and she would enjoy the music as best as she could. At the end of each visit, I would hold Helen’s hand and pray the Lord’s Prayer (it was profound to see her lips move as she tried to pray with me). As I closed the visit with prayer, Helen would often look at me with a smile and say, “Thank you!” It was uplifting to realize that these moments of music and prayer had touched her in such a meaningful way. Helen passed away about two months after I first began to visit her, yet I observed during those visits that she found peace and meaning in her life before she passed.
John was an older gentleman, somewhat of a recluse, dying of cancer. He seldom saw his children from whom he had been estranged. By his own admission, he was an alcoholic. There were a few folks in the area who looked in on him from time to time but he didn’t get out much.
When John first came on our service, I called him to arrange a visit. When I told him I was the hospice chaplain, he immediately declined by stating he was an atheist who would have “nothing to do with religion.” So I took it at face value and abided by his wishes.
Several months later, I decided to call John again. I felt I had nothing to lose. John was more receptive this time. He said would allow me to come over only if I “didn’t talk religion.” I agreed to his terms. As I drove to see John for the first time, I didn’t know what to expect. Upon meeting John, I found him to be very interesting and really quite friendly. We would sit out on his back deck under the hot summer sun. He would have his beer and always offer me a Coke. John, I learned, had a real love for nature and animals (he explained to me how to attract orioles in my backyard by placing grape jelly in a plastic dish; something I later did in my own backyard). His love for nature was his “spirituality.” It was what gave him purpose that he truly enjoyed.
John let me visit him once a month. After visiting John for several months, I decided to step out a bit. At the end of one visit, I said to him that I would be praying for him. He actually didn’t mind that. By doing so, I don’t believe I was forcing anything on him except it was my way of reaching out to him. John told me he didn’t mind people who were “religious;” he just didn’t want anyone to force it on him.
John’s life ended tragically. He often confided to me that he wasn’t afraid of dying but fearful of going through the pain that cancer would bring him (he had been through chemo, it was incredibly painful for him and he did not want to go through it again). One day John decided it was time to take matters into his own hands and ended his life on his own.
Later that same day I met with his family at his house in which he died. The family seemed to be doing OK despite the tragedy. They were saddened but accepting. They knew I had been visiting John although they were surprised that he would allow a chaplain into his home. Still, they appreciated my reaching out to him and the relationship I had built with him.
John will always be someone who will have a special place in my heart. Although I could never talk to him about matters of faith, John was very spiritual in his own right, and I recognized what gave him peace and comfort the most: his love for nature and animals. It was his “spirituality” – the things that were most sacred to him.
Frank lived in a local nursing home. He did not have any living family nor did he have any children of his own. A local family from his church looked after his financial concerns. He had, at one time, been involved in Christian mission work in the western United States. Even though he was a man of faith, he was not a happy person. Each visit I tried to make, he threw me out of his room. I tried not to take it personally since he yelled at everyone who came to see him (including doctors, nurses, nurse aides, etc.). There were times that I wanted to give up on him.
As Frank began to decline, he seemed to be more agitated. I began to wonder if he was under some kind of “spiritual distress,” i.e., was he seeking peace but couldn’t find it? As I pulled up in the nursing home parking lot for what was to be my final visit before he died, I prayed for receptive audience.
He was resting when I entered his room. He woke up, looked at me, and said, “What do you want?” I replied, “I just want to see if you are OK.” He said to me, “I just want to go home!” I interpreted this as his need for permission to let go. I replied, “I know, Frank. You soon will be going home!” Frank looked at me, smiled and said, “Thank you!” This smile was the only one that I ever got from him. He died two days later. This was the “sacred moment” he was looking for: assurance and permission from someone that he could finally let go and be at peace.
For families of those who are in hospice, their primary goal for their loved one is peace and comfort to enjoy quality time while they can. Although most families have accepted the outcome, they can feel quite helpless as they sit on the sidelines. As family members, we often want to “fix it” when it comes to someone we are close to. The reality is, of course, that we cannot.
Family is just as important as the patient in terms of spiritual needs. We cannot discount the thoughts and emotions of family as they often struggle with doubt and second thoughts regarding their decision to put a parent or spouse or other family member on hospice. Often times there are feelings of guilt or fear that their loved one may resent being placed on hospice especially if they have already been put in a nursing home. The family is looking for assurance that they did the right thing for the one who they love the most. As a hospice chaplain, it’s important to remind family members that they made the decision out of love and concern for the person they are taking care of. It wasn’t out of spite or anger but a decision made with the right motives and best interests in mind.
So what can you do to help the dying and their families?
I am often asked that very question from both friends and strangers when they learn about my career. Sometimes the first person we want to call is clergy; we look to clergy for the right answers in situations such as this. The truth of the matter is that each of us can be helpful to bring comfort to the dying. It does not have to be the “professional” alone. Anyone can be there “in the moment” to help a dying person find solace, comfort, and peace.
Here are a few suggestions.
First, the most important thing you can do is listen. Listen to what the dying person is saying. They just want to be heard. They are looking for someone to listen to their dreams, wishes, and concerns as they get to the end of their life. As mentioned above, many times the dying fears becoming a “burden” to their loved ones. They struggle with losing their independence especially those who have been very active all their life.
Second, validate and affirm what the dying person is saying through their feelings. They want to know that someone cares and their feelings matter. A dying person may give reflection on the life they lived; they may wonder if they made a difference in this world and if their life really mattered. There may be thoughts and feelings of guilt over the choices they made. They may need to know they can be forgiven.
I can remember one man with who I spent some length of time and being there a couple of days before he died. He was in his early sixties and spoke with much regret about the life he lived and ways he felt he let others down, especially his mother. As a single parent, she tried so hard to be a positive influence in his life by raising him in church and teaching him good values. Instead, he turned his back on all that she taught him. He got involved in a life of drugs, alcohol, and other poor choices. Now he was paying the price for his lifestyle choices. He regretted how much he had hurt his mother and broken her heart more than once. In the end, he worried if God could forgive him. I was there when he took his last breath. I had just finished reading Psalm 23 (his favorite) when he opened his eyes, looked directly into the eyes of his cousin (as if to give her assurance he would be OK) and was gone. The peace he felt at the end was possible because he was able to express his feelings and find forgiveness.
Third, be willing to be “vulnerable” in the moment with the dying. I believe that sitting with an actively dying person is one of the most difficult things anyone can do, yet it is also the most rewarding. As you are listening to the emotions, wounds and hurts of the dying person, you are allowing yourself to identify with what they are experiencing. Their pain can become yours as you try to help them find meaning and dignity in their experience. It isn’t easy to be vulnerable with the dying. Unfortunately, we are trained to avoid being vulnerable early on in life.
But the dying person has so much to teach all of us about life. We, as a society, need to get past the idea that dying is bad and to avoid and prevent it all costs. I do believe there is such a thing as a “good death.” We should remember that dying is as natural as the experience of childbirth. It can and should be a meaningful experience in order to find meaning and purpose in suffering.
Curtis Freed is a spiritual care counselor at Harbor Hospice in Muskegon, Michigan, and a former chaplain at Fred and Lena Meijer Heart Center in Grand Rapids. This was originally published in Muskegon Magazine and is used with permission.