By Deacon Charles Rohrbacher
“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.” -Dame Cicely Saunders, founder of the modern hospice movement
Two years ago, my dad went into kidney failure. Just short of turning 90 years old, he chose not to begin dialysis treatment, but instead to return home from the hospital and enter hospice care. With the help of hospice nurses, a social worker and a chaplain my mother, my two sisters and I were able to care for him until he died, nine days after coming home.
With their expertise, guidance and support and the pastoral care provided by his parish, dad’s death was peaceful, painless and holy, which was all we could hope for. It was not an easy time, but those nine days caring for him were one of the most meaningful (and heart-wrenching) experiences of my life.
Although both of my parents had been hospice volunteers in the 1980’s, and I had helped care for a friend in hospice care during his final months and days, there was still a lot that we didn’t know and still needed to learn about hospice. More recently, (having served with Deacon Mike Monagle as a volunteer hospice chaplain and now part-time on staff as the chaplain here in Juneau), I’m still learning. I’m grateful for all that our patients, their family members and my colleagues patiently teach me every day.
The modern hospice movement began with the establishment in 1967 of the St. Christopher’s Hospice in London under the leadership of its founder, Dame Cicely Saunders. The hospice was aptly named: St. Christopher, the patron saint of travelers, is also the patron saint of the dying, whom it is our privilege to accompany and assist as they make the passage from this life to the next.
A medical doctor and a social worker, Dame Cicely was an instrumental advocate for palliative care as a medical specialty, that is, the provision of therapies that provide patients with relief from the painful or distressing symptoms of their illnesses.
The model of hospice care that she pioneered applied what she had learned about palliative medicine to the care of the dying and those with terminal diagnoses, but addressing in a holistic way the physical, emotional, social and spiritual needs of patients and their families at the end of life. Hospice care also includes bereavement services and support to family members and friends for a full year after the death of their loved one.
As important as controlling the physical pain that can sometimes accompany a terminal illness, hospice care is also designed to address in a wholistic way the emotional, social and spiritual distress and pain that a dying patient and their loved one’s experience as well. For this reason, the hospice team includes not only doctors and nurses, but social workers and chaplains as well as physical, occupational and speech therapists as required. Most hospices also incorporate the services of trained volunteers into the plan of care.
As is the case in Juneau, hospice care is most often provided in the patient’s own home or home of a loved one or in a facility such as an assisted living facility, where the patient is a resident. In other communities, hospice care may be provided in a free-standing hospice center or even in a hospital setting.
When care is provided at home, the hospice team develops a care plan that addresses the specific needs of the patient for pain management, symptom control, and the social, spiritual and other support required for them to have the best quality of life during the time remaining to them. The team works closely with the caregivers to educate them about how to confidently care for and support their loved one and are on call day and night to provide advice, guidance and support either on the phone or as necessary in person.
Hospice also relies on trained volunteers to do everything from helping to deliver and set-up medical equipment, to interpreting for non-English speakers, reading to patients, playing music or sitting by their bedside.
Hospice and Homecare of Juneau is one of the services provided by Catholic Community Service (CCS). Hospice is non-sectarian and serves all patients and their families regardless of age, religious beliefs, race, type of illness or ability to pay. But like all the services provided by Catholic Community Service, the work of hospice exemplifies the daily living out of the corporal and spiritual works of mercy and extends to those who are dying and to their loved ones the love and compassion of Jesus that is at the heart of our Catholic faith.
If you live in Juneau and are interested in exploring becoming a hospice volunteer, you can contact Janna Auger, the volunteer coordinator at 970-500-2303 or at Janna.firstname.lastname@example.org
For more information about Hospice and Homecare of Juneau, please go to: ccsjuneau.org