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From her years in the workplace, to walks in the park, to volunteering at her granddaughter’s school, Carol enjoyed her active life. Even a battle with breast cancer didn’t keep her down for long.
But then her cancer returned and made its way to her right hip. Three failed hip replacements later, Carol was housebound and depressed.
Dave also grappled with the discomfort, frustration and isolation caused by cancer and severe arthritis. With limited use of his legs, Dave struggled to get around, even within the confines of his home. His misery grew with each passing day.
Both patients found support and relief in a new palliative care program developed by TriHealth and Hospice of Cincinnati, called PalliaCare™*. PalliaCare™ provides relief for people who live at home while struggling with the symptoms and stress of a serious illness.
Most people associate palliative care with hospice care. While palliative care is an important part of hospice care, it can also help people who are not near the end of life. Palliative care improves quality of life by providing emotional, social and spiritual support for patients and families to reduce suffering from serious illness.
“Palliative care focuses on improving the quality of life whether the patient is seeking a cure or simply seeking comfort,” said Lisa Taphorn, BSN, RN, Clinical Operations Manager of the TriHealth Palliative Medicine Team.
Depending on the patient’s needs, palliative care teams usually comprise a physician trained in palliative medicine, a nurse practitioner, nurses and a social worker, and can include chaplains, pharmacists, occupational and physical therapists, a dietitian, an art therapist and mental health providers. The team will also help connect the patient to supportive community resources.
PalliaCareTM supports patients who are living at home and need help coping with the symptoms and side effects of serious illnesses like cancer, heart disease (including congestive heart failure), renal disease, liver disease, neurological disorders (like ALS, MS and Parkinson’s), lung disease (including COPD) and stroke. The team addresses physical and emotional symptoms including shortness of breath, fluid retention, fatigue, poor appetite, insomnia, physical pain, anxiety and depression.
Team members also work with patients on “goals of care” planning, including advance directives (Living Wills and Health Care Power of Attorney), resuscitation orders (DNRs) and emergency health care plans. Many people with serious illness want options so they don’t have to be hospitalized.
Palliative care is usually covered by Medicare and Medicaid as well as most private insurance companies.
Palliative care usually begins with a physician referral and a home visit by a nurse practitioner. “Seeing the patient in the home environment is important to determine what the true care needs are,” said Taphorn.
Those needs can vary widely. Examples include a need for better sleep, a wheelchair that fits better through doorframes, an easier way to take prescribed medicine, or window screens that allow fresh air inside the home.
Dave’s team identified ways to help improve his ability to get around in his home with a small wheelchair and physical therapy, among other suggestions. Simply lending an ear – just listening – also helped Dave cope. “She wants to hear about what’s going on,” he said of Brittany, his PalliaCareTM nurse practitioner. “She doesn’t just come in the door, stick you with a thing, take your blood pressure and this and that and head out the door.”
But it was a dog that may have made the greatest difference for Dave. As PalliaCareTM social worker Ally watched Dave struggle with feelings of hopelessness and loneliness, she learned that he and his wife had been thinking about adopting a dog for a long time. Ally encouraged it, and soon Dave and Gloria were the proud owners of a senior dog that was desperately in need of some loving attention. “She’s been a winner,” Dave said about the bundle of fluff that rarely leaves his side.
Carol’s nurse practitioner, Valerie recognized immediately that Carol was in tremendous physical discomfort. Pain medicine patches were suggested to Carol’s doctor, who ordered them. Now Carol can keep up with laundry, making meals and going to the grocery store. Having someone to talk to about her situation has also been a great relief.
“I haven't been able to walk without help, and that's killing me,” she said. “I get really depressed. It helps so much to talk to somebody like Valerie. She explains things a lot better than a doctor does. She just kind of perks you up a little bit.”
Research has shown that palliative care improves the management of symptoms related to serious illness, and improves patients’ overall sense of well-being. In 2010, researchers at Massachusetts General Hospital found that patients with metastatic lung cancer who received palliative care early reported experiencing a higher quality of life than those receiving standard care. They were also less likely to suffer from depression, and lived several months longer. Other studies report similar results.
Carol’s and Dave’s improved outlook confirms those research results. “If it wasn’t for Brittany and Ally, you could have written me off a long time ago,” Dave said.
“It is remarkable how much benefit that home palliative care offers to patients with serious illness and how we can help reduce suffering,” said Barbara Rose, MPH, RN, Senior Program Administrator.
To learn more about how you or someone close to you can benefit from PalliaCareTM, call 513 246 9799 or send an email to PalliaCare@trihealth.com. For information about hospice care, contact Hospice of Cincinnati at 513 891 7700 or visit our website at https://HospiceOfCincinnati.org/.
*PalliaCareTM is made possible by a generous grant from bi3, Bethesda Inc.’s grantmaking initiative to transform health in Greater Cincinnati.