Our volunteer and paid staff recently attended, "Pause for a Cause," an event at Acacia Reservation Clubhouse. This free luncheon encouraged our treasured volunteers to pause and reflect upon their commitment in upholding our mission and to celebrate the many ways they impact our patients and agency.
Thank you to our attendees, Master of Ceremonies, Laurie Steiner of Golden Opportunities TV and presenters Leigh Herington and Roz Frabotta for making this such an inspiring event.
Below, Leigh Herington shares a historical perspective on the impact volunteering for the past five years for Hospice of the Western Reserve has made on his life.
His (abbreviated) moving words below are well worth the read:
"I became a Hospice of the Western Reserve volunteer in 2011, and now serve as a volunteer for the Hospice of the Western Reserve at the David Simpson Hospice House on the lake in Cleveland.
When I say that I am a hospice volunteer, some people seem to conjure up these visions of negatives relating to death and dying. What I have learned from Hospice is that it is the art of living well.
Today I want to share with you some of the lessons I have learned in the last five years:
- Joe and his wife are the guardians of their 7-year-old grandson, Tommy. Tommy is eager to have his "Papa" teach him how to fish. One spring day Joe and Tommy enjoy a fishing outing. Just before getting ready to put the fishing gear away and share a picnic lunch, Tommy catches his first fish!
- Mary enjoys playing the slots, and the Casino in downtown Cleveland is open. She decides she wants to see the grandeur of the casino. Mary spends an afternoon enjoying the sights and sounds while trying her luck at the machines.
- Mike's daughter is getting married. He and his wife celebrate with family and friends at a lovely wedding and reception. After greeting their guests and enjoying an abundant buffet, all eyes are focused on the dance floor as Mike and his daughter are called for the traditional father-daughter dance.
What do Joe, Mike, and Mary have in common? They are all Hospice patients, living their days to the maximum. Hospice staff and volunteers provide the support and opportunity for them to experience events and activities that are important to them and their families.
The tradition of hospice care
Between the year 1000 and 1492, in Spain alone, there were 300 Hospice facilities. These facilities were the forerunners of hospitals. These hospices were places of respite and for travelers who fell sick and died. Within these walls was a tradition called the ars moriendi, or the art of dying. Entire societies were once committed to doing whatever it took to support the peaceful dying of its citizens. These techniques included connecting body, mind and spirit.
The ancient Celts saw the parallel between the processes of birthing and dying. In their tradition, the ideal hospice employed midwives, called Anamcara, who assisted both birthing and the dying processes, under the same roof. The job description of the Anamcara was to do whatever it took to resolve all types of pain, emotional and physical, at the end of life.
By the 16th century many of these programs ended. By concentrating exclusively on the physical aspects of caregiving, Western medicine would eventually lose its centuries-old instinct concerning the emotional and spiritual needs of the dying.
As technology grew so did the ability of medicine to greatly improve the delivery of curative care. And how fortunate we are to have doctors and medical breakthroughs to bring us to the current level of medical science.
Unfortunately, we talk a lot about physical pain in our society, but how much do we talk about spiritual pain? Spiritual pain is pain of the spirit, not physical. Spiritual pain and suffering not caused by physical pain or other physical symptoms is common for persons with life-limiting illnesses and for their families. Spiritual pain can include religious pain, as well.
According to the American Book of Living and Dying, there are four main types of spiritual pain:
Meaning is whatever has significance or connotes purpose in life. Relatedness is that which connects us to others. Hope is to desire with the expectation of fulfillment. Hopelessness is the most severe form of spiritual pain. Forgiveness is a voluntary choice of action regarding the wrongs and hurts of the past toward others and ourselves. Believe it or not, over 50 percent of spiritual pain that is dealt with is forgiveness pain.
Author M.L. Stedman in her novel "The Light between the Oceans," addressed this issue when her character said, "I can forgive and forget. It is so much less exhausting. You only have to forgive once. To resent, you have to do it all day, every day."
Our ancestors understood that once spiritual pain is diagnosed, it can often be treated thereby mitigating suffering. They also observed that when mind and spirit are cared for along with the physical self, most fears – and suffering—about the end of life vanish.
A Personal Story
I want to share with you an event that happened at David Simpson Hospice House recently that speaks to assisting with spiritual pain. John was an ALS patient in a hospice facility. Most of you probably know that ALS, Lou Gehrig's disease, is a debilitating disease that renders a sound mind trapped in a totally dependent body. As the disease progresses, speech and even the ability to chew and swallow are affected.
Because of this, the time it took to feed John was extremely lengthy and volunteers were utilized to help feed John his meals. One summer afternoon, a luncheon BBQ was hosted in the atrium of the hospice house and John's volunteer offered to take John. His bed was pushed out into the atrium so that he could participate and engage in the activity. A couple of guests shared a table with John and others stopped by to say hello. As the lunch hour wound down, though, participants began leaving, the buffet table was being removed and the atrium was being returned to its usual setup. But John was still working on his lunch. "I'm too slow," he told the volunteer. She looked at him and replied, "I'm not going anywhere. You have somewhere to go? Just take your time and enjoy your meal."
John finally finished eating, and as he was being readied to return to his room, he said two words, "I'm happy!"
Cicely Saunders, who started modern Hospice, would have loved this story. She was quoted as saying "You matter because of who you are. You matter until the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to help you live until you die."
Hospice & Palliative Care
More and more you are going to hear about total pain management in the care of people that are facing life-limiting illnesses. We will be dealing with all types of pain including physical, emotional, psychological and spiritual pain.
You may have heard of the term palliative care, which for the last 30 years has been provided by hospice programs serving more than 1.2 million American patients and their families each year. To palliate means to make comfortable by treating a person's symptoms from an illness. Hospice and palliative care both focus on helping a person be comfortable by addressing symptoms – both physical and emotional. Improving the quality of life of an individual coping with a serious illness and supporting that person and their family are the main goals of palliative care.
Hospice is provided when a patient's life expectancy is months rather than years. Some hospices provide palliative care as a separate program or service, such as Western Reserve Navigator, offered by Hospice of the Western Reserve. By being in the Navigator program, patients and families can expect
- A decrease in caregiver stress
- Fewer trips to the ER and hospital admissions
- Improved coordination of health care services
- Increased health information and referral to community resources.
A major difficulty for many people is the reluctance to face death, either one's own death or the death of a loved one. In part, this is due to fear of the unknown-the mysteriousness of death- as well as its corporal finality. Ignorance of the dying process must be replaced with an understanding of the physical, emotional and spiritual changes that occur as the time of death approaches.
Often there is a significant problem with the family members who don't want to accept the reality of the situation. In her book, "Final Journeys," Maggie Callahan, a veteran hospice nurse, describes her visit with the Jackson family.
On my first visit with the Jacksons', I was met by twelve very worried family members and friends. One of her children said, "Granny doesn't know how sick she is. If you tell her she's dying, it will kill her!"
I was instructed not to utter the words cancer, terminal, dying or hospice.
We all piled into the room together. Granny did seem vague and uninformed about her condition. I said, "Mrs. Jackson, would you mind if I asked your family to give us some privacy so I can check you over?" She said yes, and they all filed from the room. The second we were alone, Granny grabbed my hand and urgently whispered. "I know what's wrong with me. I know I'm going to die soon. But please don't tell my family yet; they're not ready to deal with it. If you told them now, it would kill them."
Thus, not only is the hospice mission to promote the art of living well, but, as death is ultimately inevitable, hospice must also foster and support the dignity of dying well. Dying is as individual and unique as each person, and should be a "celebration sendoff" of a special life.
Speaking of a sendoff, in preparation for this speech I have had the opportunity to look into some famous last words. A few you might find interesting.
From the late 1800s through the 1930s, con artist and comedian Wilson Mizner and his brother Addison traveled from Florida to Alaska bilking people out of their money, often with a sense of humor. He once entered a candy store with a gun and a black mask, shouting, "Your chocolates or your life!" On his deathbed in 1933 he briefly regained consciousness to find a priest there to whom he said, "Why should I talk to you? I've just been talking to your boss."
Thomas Edison, arguably America's foremost inventor, received only three months of schooling in his entire childhood. Plagued by lifelong and worsening hearing loss, Edison's gifts to the world were more sound—the phonograph and talking movies—more light—the light bulb and better communications—the telegraph. Near death in 1931, his wife, Mina, asked him if he was suffering.
"No," Edison replied, "Just waiting." Then he looked out his bedroom window and uttered these last words, "It's very beautiful over there."
With the help of hospice, as death becomes imminent, it can be faced not with fear, but with clarity, in comfort, and in peace. And for those that remain, the grief of a loved one's loss certainly is no less real or diminished. But witnessing and supporting a loved one's dying well can hopefully also be transformational for the living.
Visioning may take place, and the dying person may be seeing or communicating with others unseen to us. They may also have a sense of impending death and speak in metaphors, such as talk of going on a trip. These experiences may be very comforting.
The literature is replete with stories of people that have visions prior to death. We have a good friend whose father shared a personal visioning experience with her a few weeks before he died. Although he was a very religious man, he had a great fear of death. One day when she went to visit him, he told her, "I died last night."
She was taken by surprise, and responded, "You mean you dreamed that you died?"
"No," he insisted, "I died last night. Trying to affirm him, she asked, "Tell me about it."
But he only commented, "It was beautiful." Eager to learn more, she continued to question him, asking for specific details. "Did you see anyone?"
"Yes." He then told her that he had seen Jesus.
"Did he talk to you?" she asked.
"Well, what did he say?"
"Do not be afraid." He repeated it again. "Do not be afraid."
From that time on, he no longer feared death, but marveled at its awe. "I can't believe something so beautiful could happen to me," he told his daughter multiple times in the next couple of days. Soon thereafter, he died peacefully... and unafraid.
If you are a religious person you can find great value in these anecdotal descriptions of visions. If you are not, you can understand how these experiences help a person to become comfortable and peaceful prior to their death.
Positive End of Life Experience
In closing, I would like to share the story of two people who each in their own way had a very positive end of life experience. Irish folk singer-songwriter, Tim Wallace, who was in the final stages of lymphoma was featured on the front page of the Plain Dealer. The photo showed Wallace, 65, laughing with his dear friends who gathered at his bedside on St. Patrick's Day and for four days before, at his bedside in the Ames Family Hospice House.
They sang Celtic songs and gave him his last days in a perpetual jam session. The article read: "Cancer is going to win the battle. But it's going to be a hollow victory, because in his remaining days, the spirit, the guile, the guts, the humor and the very love that is Tim Wallace has won the way."
It was the first time that Wallace had not had a St. Patrick's Day gig since he was 16. You could see it in his face, love was all around him. It was a St. Patrick's Day that no one there will ever forget and the best gig that Tim Wallace ever had.
The second glimpse is a personal story of my observations of the passing of the matriarch of one of Northeast Ohio's prominent families. She was in her late 70s and had lost her husband not too long before. She was diagnosed with a double whammy: lung cancer and serious diabetes. She decided on her own not to have the surgery for the cancer or other treatments and she began to participate first in palliative care and, then, hospice. She lived for 18 months and every day was a blessing for her.
She had the advantage of visiting nurses, and other health professions helping to provide pain assistance, as well as social workers and hospice volunteers. I visited with her two days before she died. She was happy. She had no physical pain. She had no spiritual pain. She left this world on her own terms. That is the mission of Hospice. That is the art of living well.