Hospice--The Face and Hands of Compassion

By Andrew Layton

Picture a chapel filled with hundreds of people, all from different walks of life and many of them with babies and young children. Now imagine the background noise you would normally expect from an audience that had to sit through the reading of close to seven hundred names, one-by-one.

Sunday, January 9th, at the Hospice of Chattanooga’s annual memorial service, this was the scenario. Aside from the 691 names being read, all of who were hospice patients that had passed away between June 1st and November 30th last year—not one whisper, not a baby’s cry, not one other sound was made. It is the emotionally powerful silence of the staff and family members collectively paying their respects that afternoon, which illustrates the profound effect the Hospice of Chattanooga’s services have on so many families in the community.

Founded in 1981 by volunteers, the Hospice of Chattanooga provided end-of-life-care to 76 patients in the first year. By 2004, approximately 1700 individuals had benefited from their services and those numbers continue to grow each year.

This year, approaching their 25th anniversary, Hospice will expand its service area to include a total of ten counties in east Tennessee and eight counties in Georgia. However, despite rapid growth, a large part of the population is still unaware of what hospice care is, even though it has been in the United States for over thirty years.

Founded in London by Dr. Cecily Saunders, hospice is a specialized method of care that provides comfort and support to people in their final stages of terminal illnesses. It seeks to provide patients with the highest quality of life possible, by managing their pain and symptoms at home or in as homelike a setting as possible. Hospice allows patients and their families to focus on all of the emotional and spiritual aspects of care as opposed to solely focusing on the medical procedures that so many times dominate the end of life experience.

One very effective part of hospice care is the team treatment approach. A multi-disciplinary group of experts that consists of a physician, counselor or pastor, therapist, social worker, aides and volunteers gets assigned to each patient and their families. Together they develop a care plan that will best manage the patient’s pain and symptoms, and they outline the best way to meet the psychological, social, and spiritual needs of both the patient and family. Weekly meetings to compare notes and share observations enable the care teams to constantly provide their patients with the best level of hospice care possible.

Dealing with the death of a loved one is considered to be one of the most traumatic events that many people will ever go through. From sadness and anger to anxiety and guilt, the grieving process involves many emotions that can be very hard to deal with, especially alone. Carla Goette, a bereavement counselor at the Hospice of Chattanooga, has been working with a single woman who recently lost her mother. Carla persuaded her to take a trip to her mother’s final resting place and asked her to sit down and share some of the happy memories of her mom. They decided that they would come back a year later, have a picnic, and laugh about the great times she shared with her mom.

Counselors insist there is not a right or wrong method when it comes to mourning the loss of a loved one. But some people stop living their lives because they feel guilty for surviving. Bereavement counselors also seek to enable patients to stop worrying about their loved ones. They know that the Hospice team will help them deal with their grief. Hospice also maintains a variety of support groups that allow people to see that they really are not alone. Counseling services are not only available to family and friends of patients within the hospice care program, but also any member of the community that may need help working through a trauma or loss. This type of assistance is part of the patient care process as the care team outlines the best way to meet the psychological, social and spiritual needs of all parties involved.

Hospice care maintains contact with patient’s family and friends for at least 13 months after they have passed away. At first people consider this to be an odd length of time, but firsts are actually the key behind this decision. The year following the death of a loved one involves difficult dates like birthdays, holidays and other special occasions that can cause people to revisit many grief-related emotions. People find ways to keep themselves busy within their everyday lives, but special events tend to present a sudden shock that they may not have been ready for. Bereavement counselors keep track of these occasions and check in with those who have been affected.

Counseling services are also a very important part of the patient’s hospice care. Many patients seem to be held back from truly enjoying the end of their lives by unnecessary emotions or things that they simply need to work through or just get out in the open.

Friends and family also play a very important role in the hospice. Care teams always try to involve them in a patient’s care unit as much as possible. And when family members cannot provide the necessary care or a patient does not have family of their own, the Chattanooga Hospice team explores other routes to help, in the patient’s best interest.

In many cases, members of the care team also become so familiar to patients that they get treated like another family member. Johnston recalls the story of one current patient whose face 'just lights up' with a smile when the CNAs (certified nursing assistant) or nurses come in to the room. 'Her whole demeanor changes and she actually tries to reach out to them,' he says. 'This person has stage IV Alzheimers—very noncommunicative. That tells me a lot about what we do.' Often spouses and relatives trust members of the Hospice care team enough to leave them alone with patients. Johnson pointed that it’s acts of trust like this that prove just how strong the bonds become between families and caregivers.

Pediatric and Adult Hospice Care

Each year over 50,000 children die in the United States and today less than one percent of children in the country receive the hospice care that they need. With such a large demand for pediatric hospice care that is only getting bigger, the Hospice of Chattanooga decided to take their existing children’s care and turn it into a whole separate hospice dedicated solely to kids. 'We have had pediatric care ever since I have been here,' says Johnston. 'A few years ago we took a look at the whole program and decided that Children’s Hospice and Adult Hospice are so different, that we needed to make that a separate entity within the organization. Thanks to some generous people in the community, First Tennessee Bank, the Maclellan Foundation and some other generous folks, we got the grants to hire a separate full-time pediatric coordinator to head up the program. That person is responsible for staff, and for working with TC Thompson, the Ronald McDonald House, Vanderbilt, Emory, St. Jude’s over in Memphis, and all the other folks we get referrals from. This year you are really going to see this program take off. At one point we had 13 or 14 patients in this program. I think that’s just the tip of the iceberg, there are a lot more patients and families that could use the services.'

Hospice has also started to offer a prenatal program that provides hospice services like grief counseling to parents whose children either don’t make it to term or die soon after they are born. The pain of losing an unborn or newborn child can be just as traumatic as losing any other member of the family.

Hospice care has come a long way in the medical field. There is no longer any need to defend hospice care, but we must publicize it. According to Johnston many people begin to pay more attention as they consider that treatment choices they would have chosen for a relative or themselves in the past, may suddenly not be the right answer. Pain management, counseling and the healing power of love are among those things to consider. The sympathetic care, respect, honor and comfort woven into the fabric of Hospice of Chattanooga service envelops families with support when they need it most.

For more information see www.hospicenet.org.