Supportive Care during difficult times

by Kate Vanskike Smith

"Bob” was an elderly gentleman suffering from dementia. Despite the medical therapies he was receiving while in Sacred Heart’s Psychiatry unit, Bob’s anxiety escalated and he simply refused to eat. The longer this went on, the more distraught his wife became.

Then one day, Debbie, Sacred Heart’s palliative care coordinator, came to Bob’s room to offer some extra help. Not sure exactly what Bob really wanted, Debbie simply decided to sit quietly next to him, humming tunes of old hymns. Eventually, Bob began humming along and even “directed” the music. And then he promptly ate his entire meal.

We all hope life for us and our loved ones will be free of trauma and disease. But devastating health conditions do happen, and without all the right pieces in place, they can make both life and death more complicated.

For those times, supportive care endeavors to make the experience of disease and death less frightful and more meaningful.

At Sacred Heart, the Supportive Care Program has three components: palliative care for adults, children, and pregnant mothers and their unborn babies. Debbie Ridgley, RN, often sits with patients to discuss their concerns.
Debbie's simple gestures and comforting presence reflect the heart of Sacred Heart's developing palliative care programs.

The term "palliative"-which literally means "a cloak of protection and comfort"-is often described as "supportive care." It is one of the most misunderstood and unrecognized aspects of health care, often mistaken for hospice care.

Palliative care is supportive, coordinated care for any patient of any age with a diagnosis of a life-limiting condition. It focuses on the physical, emotional, social and spiritual needs of people with serious illness (and their families) and is provided by an interdisciplinary team of specialists, simultaneously with all other medical treatments.

Supporting adults with disease
“A lot of palliative care is done automatically, but in the complexity of the health care system, there are many areas where caregivers don’t connect,” explains Jim Shaw, MD, medical director of the Providence Center for Faith and Healing at Sacred Heart. “And that connection is the key to palliative care, especially for patients with complicated illnesses.”

Members of the Supportive Care team assist other care providers with concerns related to treating symptoms more aggressively, addressing ethical issues, providing bereavement support and coordinating social services or spiritual care. They help each patient explore the losses he or she may encounter, like physical functions or the ability to keep a job. They also work closely with families to help determine the goals of care, such as when to seek more curative measures and when to stop treatment.

In April 2007, these efforts were enhanced greatly with the addition of a full-time nurse coordinator (see “It Takes Money” below). Debbie Ridgley, RN, who has 20 years’ experience in oncology and hospice nursing, is well acquainted with the needs of patients and families dealing with chronic illnesses.

“Sometimes, nurses request assistance managing the complexities of pain management or physicians want help handling those sensitive but necessary conversations. We can lend a hand with all of that,” Debbie says. “We don’t take the place of other caregivers … we’re just there to augment the care. Nurses often don’t have the time to simply sit with a patient and hold their hand or visit with the family. Those are things I can do.”

She and Dr. Shaw work together with a chaplain, social worker, pharmacist and music thanatologist. A member of Psychiatry is also available to provide consultation for patients who have anxiety about their conditions. Meeting weekly to review needs and referrals, they determine where the focus needs to be and who is most appropriate to respond.

“Sacred Heart already provides patient-centered care,” adds Dr. Shaw. “This just allows us to offer it more consistently and thoroughly.”

Cancer units have traditionally been the most likely places to focus supportive care efforts, simply because the trajectory is more predictable than other chronic illnesses. But now, palliative care providers are seeing a higher percentage of patients with other chronic illnesses, such as chronic obstructive pulmonary disease (COPD), dementia and congestive heart failure.

While palliative care is often directed by the dying process, the goal is to help people live as fully and functionally with their diseases as long as they can.

“It’s really about a better quality of life,” Debbie says.

Comfort care and family support
Sometimes, the role of the supportive care team is communicating with family members who are scared or confused about what is going on with their loved one.

“Care of the family is absolutely essential to making the patient more at ease,” says Debbie.

It Takes Money

In 2006, the Sacred Heart Medical Center Foundation provided nearly $40,000 to support palliative care. A small portion funded a spirituality initiative for the entire nursing staff of the 7th floor where cancer patients and others who may need supportive care are often hospitalized. The rest pays the salary of the full-time RN coordinator position for a six-month trial period. To keep the RN coordinator, Sacred Heart will need to add the full-time position to its permanent staff; even if that occurs, the team will still need additional funding to enhance outpatient services and conduct research.

The Sacred Heart Children’s Hospital Foundation’s two-year Community Partner Grant from the Lance Armstrong Foundation ended Summer, 2007. The $40,000 grant provided training and resource development related to pediatric palliative care, including education for physicians’ clinics in eastern Washington and Montana to help connect families to these resources. Even with another $10,000 grant from the Children’s Hospital Foundation, there is still much work to do to develop the systems needed to coordinate services for children who need ongoing medical care.

A major concern related to palliative care is the fact the hospital receives no reimbursement from insurance carriers or Medicaid. That’s why philanthropic support is so important. If you would like to help ensure the future of the Supportive Care Program, please contact us!

Sacred Heart
Medical Center Foundation
(509) 474-4917
www.shmcfoundation.org

For her, that often means working irregular hours and long days … whatever it takes to make sure families’ needs are met.

“There was a patient whose family was really having trouble letting go and yet he was suffering terribly. He needed someone to explain it to them in terms they could accept. It didn’t matter that I’d already been here 10 hours … how could I go home unless this was taken care of?” Debbie shares.

One time, a family had just learned their loved one’s disease had progressed to the point that having more surgeries was not going to help.

“They were unable to make decisions because they were afraid they would not be respecting her wishes,” Dr. Shaw remembers. “And all the while, the patient was visibly distressed. When Debbie went in the room, she gently stroked the patient while talking with her. The way she touched her was so respectful and so caring and the way she asked her questions, she put the patient at ease.”

Together, they were able to determine what the patient needed to be more comfortable and changed her pain medication. When they returned, she was not only awake and smiling but was able to communicate her wishes to her family. She was moved into a comfort care room and her family had the opportunity to celebrate her life.

“It turned into a really beautiful time for that family,” says Debbie.

Even as the team is working full-time just to serve the needs of patients who remain at the hospital, they are already well into the planning stages of offering outpatient services, too. By early Fall, Dr. Shaw will be providing clinical care to patients who have been discharged from the hospital, as well as arranging counseling services at the Providence Center for Faith and Healing. Team members will also go to nursing homes and even offer home visits, serving either as consultants for the primary care physicians or stepping into the primary role for physicians who cannot take care to this level.

“We don’t want our services to end when the patient leaves the hospital,” says Dr. Shaw.