Hospice: Endnotes

All of the printed quotations, except for the Rollo May quote, are taken directly from the hospice volunteer training manual and are accurate quotes from past patients and volunteers.
One of the most active volunteers, giving patient and family support, is wheelchair bound.
The founder of Hospice of Dayton, a local nurse named Betty Schmoll began hospice, in the late 1970’s, after her mother had died an extremely painful and unpleasant death from cancer. Betty was supremely concerned that every thing possible be done to ensure the comfort of the dying patients. This was taken into consideration when the current hospice building was designed and built. Every patient room is on the ground floor with floor to ceiling windows, a garden view and their own personal birdfeeder which is filled twice weekly by a 96 year old volunteer. Every room has bathroom doors that swing in both directions, softer mattresses than hospital beds, and high quality linens including down filled comforters and pillows.
One of the services provided by hospice on their inpatient ward is a “snack cart” brought around in the evenings for patients and their families. The cart is stocked with various soft drinks, juices, snacks of all sorts, books, magazines, as well as things the patient might like such as extra blankets, pillows and slippers. All items are given completely free of charge.
A music therapist visits patients with a portable keyboard. She will play nearly any request.
A pet therapist also visits. In order to be considered for pet therapy, animals must undergo extensive training so that they will stay calm and completely non-aggressive no matter what happens.
One of the first signs that a patient is nearing the final days of their illness is refusal of food and drink (Connor 38).
Hospice receives nearly daily donations of flower arrangements from local funeral homes. Volunteers then dismantle the bouquets in order to avoid giving any appearance that it is a “funeral” arrangement. They re-use the flowers in casual fresh arrangements that are placed in patient’s rooms or delivered by volunteers to the patient’s homes.
Hospice programs in the United States began in Connecticut in 1974 and have grown to over 3,000 programs currently (Lattanzi-Licht 47). Hospice was founded on principles of “palliative care” brought from Great Britain. The World Health Organization defines palliative care as: “the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms and of psychological, social, and spiritual problems, is paramount. The goal of palliative care is the best possible quality of life for patients and their families” (Olson 7). As stated, one of the primary goals of palliative care, and therefore of hospice, is the control or elimination of pain for the patient.
Another service offered by hospice is massage therapy.
There is a volunteer at hospice who is a professional clown and dresses up for visits to patients and for the holiday parties that are held at the facility.
Stephen Connor in his book, Hospice: Practice, Pitfalls and Promise, asserts, “Providing for the spiritual needs of patients has long been one of the facets of hospice care that has set it apart from other health care providers” (23). At Hospice of Dayton there are professional chaplains and trained volunteer chaplains. In addition, the staff will make every attempt to contact the patient’s own pastor or to find a representative of their personal religion should there not be some one on staff trained in, or knowledgeable about, their religion.
Stephen Connor states, “There is much confusion over the meaning of the word hospice. Some believe a hospice is a place where people die. Others simply associate the word with death and are uncomfortable” (3). This surprising point was illustrated for me when I interviewed Carol Weimer, the volunteer coordinator at Hospice of Dayton. She revealed that she spends a great deal of time on the phone with physicians trying to “talk them into” allowing hospice to become a part of their patient’s care. This is my imaginary version of how one of those conversations might progress.
Another underpinning of the hospice philosophy is the patient’s autonomy: their right to make important decisions regarding their care and treatment. Allowing patients to make choices for themselves is one of the ways hospice seeks to maintain the patient’s sense of dignity and self-worth at a time they may feel out of control (Lattanzi- Licht 133-135).
In order to qualify for hospice care, patients must be considered to be within 6 months of death. Services for hospice are covered by Medicare and many private insurers, generally with benefits extending for a maximum of 18 months. However, hospice is funded primarily through private donations and is provided completely free of cost to any patient, regardless of ability to pay (Hospice of Dayton Volunteer Training Manual).
Hospice has professional and trained volunteer counselors on staff to provide around the clock counseling to patients and family members.
Betty Schmoll began hospice in 1978, with a staff of four nurses “donated” from local hospitals and a handful of volunteers. In the 25 years they have been in operation, Hospice of Dayton has grown to cover Dayton, Middletown, Highland, Warren, and Clinton counties.
Hospice is unique in viewing the entire family as one single unit for treatment (Lattanzi-Licht 29-34).
These are just a few of the things that hospice volunteers do regularly. Marietta Adams had a patient who was an elderly widower whose only family was the high school age granddaughter that lived with him. Since the granddaughter had to leave very early in the morning for school, and since the “meals on wheels” service that the hospice social worker had arranged for him did not come until afternoon, Marietta went to the patient’s house two mornings every week to cook him a hot breakfast. Afterwards, she would stay to do light housekeeping chores for him and sit with him, “simply holding his hand, talking or not.”
Hospice Bereavement services department follows and provides free counseling services to the families for 13 months after the death of their loved one. Services will be provided for longer if they are needed.
Wine and cheese parties for families are held at the facility once every month. Complete holiday celebrations with dinners, music and special visits (Santa, the Easter bunny etc.) are held on all major holidays and are open to the entire family. In addition, other social events such as weddings, anniversary parties etc. are held at the request of patients and their families.
The number of hospice patients in their, or other family member’s, homes out number the patients actually housed at the facility by ten to one. Home care patients have access to all the same facilities and services as inpatients. They are provided with visiting care from professional nurses, aides and counselors who see to the physical comfort and psychological needs of the patient and their family. Volunteers provide for their other needs such as picking up prescriptions, groceries, light housekeeping or yard work, transportation to and from doctor’s appointments, providing relief to their caregivers, and general companionship.
Approximately five percent of the cases that are admitted to Hospice, though believed upon admission to be terminal, recover sufficiently from their illnesses to be released from hospice care (as per interview with Carol Weimer).
One of the stories I was told concerned volunteer Howard Burger and a nursing home patient. The nursing home staff, concerned over their patient’s apparent depression and social isolation, called volunteer coordinator Carol Weimer. Carol contacted Howard who then spoke with the patient asking him what they could do for him. During the conversation, the patient expressed a desire for a barbecue sandwich “like the ones I had as a kid.” Howard made arrangements with the nursing home staff to pick up the patient and take him to lunch at a barbecue restaurant downtown. As the story is told, Howard and the patient had a fine time talking at length, reminiscing about “the good old days,” and enjoying their lunch. Afterwards, the nursing home staff reported that the outing, after months of confinement and social isolation, had done wonders for their patient’s outlook.
Another story, one that was told to me by Howard Burger, concerned a man that arrived at hospice without a single possession to his name. The man did not speak any English but hospice was able to find a volunteer to translate for him. The volunteer discovered he was here from Cuba, and wanted nothing more than to go to Tallahassee, Florida to spend his final days with his only family: a grown son. Carol contacted a local Cuban organization and found they were only too glad to help. From their treasury and other donated funds, the Cuban organization purchased a plane ticket for the hospice patient. A volunteer provided clothing to outfit the man for his trip and Howard volunteered to take him to the airport, finding out only later that the flight left at 3:00 am. Later, hospice heard from the man’s son that he had died soon after arriving, but that the man and his son were very grateful for the time they had been able to share. This is my fictionalized account of what a hospice nurse might write about the event.
Recently, volunteers threw a party for the birthday of one of their patient’s daughters. The mother was a patient on the inpatient ward and was very near death at the time of her daughter’s twelfth birthday. Volunteers were concerned that some thing be done for the girl’s birthday especially as it would be the last one that her mother would be alive for. They organized and threw a birthday party for her at the Dayton facility. I was told that many volunteers attended bringing gifts, cakes, cookies and ice cream. As well, a number of the Hospice nurses came in on their day off in order to try and make the occasion as pleasant and memorable for the young girl as possible.
All patients names have been changed.
Hospice gets few young, juvenile patients and these are the ones that many volunteers find more difficult and heart-wrenching. I was told a story of one young boy, a cancer patient, who was admitted to the inpatient ward for the last few weeks of his life. Shortly after his admission, he reportedly lost the ability to walk but being quite young, he intensely disliked being confined to a bed at all times. A volunteer, hearing about the boy’s difficulty, purchased a new red wagon and outfitted it with a pad and pillows to make the boy comfortable. Up until very close to the time of his death, the boy was pulled by his mother, and other volunteers and staff members, about the ward where he became a favorite visitor for many at the facility. The wagon is still at Hospice where it is used for various purposes.
According to Stephen Connor, “The hospice movement in the United States was started by volunteers. All those who labored to bring hospice services to the United States did so on a volunteer basis….All who labored to start hospice did so because they believed that the care of the dying had to be improved and that hospice was the way to do it” (26). Since that time, funding has become available and consequently, many of the services that were once done by volunteers are now done by paid professionals. However, most still consider the volunteers to be the “heart” of hospice. The primary role of volunteers in most hospice programs continues to be working directly with patients and their families where they do just about anything to help. Many families value the services of the volunteers above those services which are provided by paid employees and experience care that is given without compensation: given only through a desire to help, as a powerful thing. Connor asserts, “The extra dimension of caring provided by volunteers has always been one of the most unique features of hospice care…also one of the features that has become hard to sustain” (98). Hospice of Dayton has been fortunate that it has not experienced a volunteer shortage and currently has approximately 380 trained volunteers; nearly one for every patient on their caseload. According to Carol Weimer, some of the qualities that Hospice looks for in volunteers include; maturity, empathy, an ability to listen, a caring and compassionate personality, strong interpersonal skills, patience, sensitivity and, above all, a desire and willingness to help others.
Every volunteer in my interview claimed to receive more in return than they gave and in general, hospice volunteers report a high level of satisfaction with their volunteer work and roles (Lattanzi- Licht 157). Volunteers tend to stay at hospice over extended periods and to say that their work at hospice has enriched their own lives and improved the quality of their personal relationships. As Howard Burger said to me, “people are so nice, so grateful; always wanting to give me things, feed me, and other stuff. It gives me a good feeling and makes me feel like I am making a difference.”
Most, though not all, hospice volunteers became volunteers after suffering the death of some one close to them. Many have had personal experience with hospice being involved in the passing of one of their own close friends or family members. Hospice encourages individuals to wait at least one year after the death of their own loved one before volunteering.
All prospective volunteers fill out a lengthy application including three personal references, which, Carol assures me, are carefully checked. Then, if accepted, they must go through an 18 hour training program, usually held on three consecutive Tuesday and Thursday nights from 6pm until 9pm and offered two or three times per year. Topics that are covered in the training program include: learning and understanding hospice services and philosophies, concepts of death and dying as well as bereavement and support after the death, their role as a hospice volunteer, care and comfort of the dying patient, diseases and medical conditions, communication skills, safety and infection control guidelines, spiritual and psychological concerns related to death and dying, stress management, confidentiality and patient’s rights issues, and familiarization with the rest of the “hospice team.” Volunteers are also required to go through drug screening and yearly TB testing.
This letter is my composite, fictionalized effort at illustrating many of the sentiments shared with me by the volunteers that I interviewed for my project as well as others I have spoken with casually during the last year. Many volunteers report feeling that this is the most significant work they have done in their lifetimes. Howard Burger called his volunteer work at hospice his “true calling,” and Marietta Adams stated that her volunteer efforts for hospice have provided her deepest sense of purpose.