LIVING A QUALITY LIFE: Lower Cape Fear Hospice eases hard decisions on patients, family by Teresa McLamb, LOL contributor
According to the Center for Disease Control’s website, one in four Americans has multiple chronic conditions, such as heart failure, diabetes, COPD, cancer, dementia, renal failure, among others. For ages 65 and older, the statistic jumps to three out of four. In essence, out of approximately 550,836 residents of Bladen, Brunswick, Columbus, New Hanover and Pender counties, 80,558 of them could be suffering from multiple chronic illnesses, according to Sally Shepard, public relations and communications specialist for Lower Cape Fear Hospice.
Yet, they do not have to navigate the health-care system on their own. Cape Fear Hospice expanded beyond its historical role as end-of-life caregiving to assist individuals with palliative care. Defined as an extra layer of care and support for those facing life-limiting or advanced chronic illness, palliative care is available at the time of diagnosis and continues through treatment, Shepard explained.
About 200 regional residents are currently benefiting from palliative care, while approximately 500 are receiving Hospice care, according to Dr. Kelly Erola, MD, chief medical officer for Lower Cape Fear Hospice. The nonprofit has seen an almost 50-percent increase in the number of palliative care patients under its care during the past year.
“This is due to local large hospitals contracting with us to provide palliative care to their patients,” Shepard says. “Many other local physicians are also tuning into the benefits of adding palliative care to the care regimen for those with chronic illnesses.”
As a regulatory issue, patients must have six months or less to live in order to qualify for hospice care. Many individuals with chronic illnesses. which eventually may be terminal. are initially excluded.
The need for palliative care has resulted in Lower Cape Fear Hospice partnering with New Hanover Regional Medical Center, Novant in Brunswick County and Mercy Care in Conway, SC, to deliver palliative care through physicians and nurse practitioners. Patients and practitioners discuss their goals for pain management, for family involvement, for methods of care-giving. The movement started as an inpatient program. “[It] expanded into the community and outpatient clinics,” Dr. Erola says. “It’s an extra layer of support for patients with serious illnesses.”
For some of the patients, the caregiving will shift to hospice, but for many, palliative care provides a high level of coordinated and skilled care, which blends various specialties (for example, when a patient has heart disease, cancer and diabetes, each of which is treated by a different specialist). “They can be referred to palliative care while undergoing aggressive treatment,” Dr. Erola notes.
The notion of palliative care in our area is relatively recent, so Dr. Erola and others, are anxious to have resident know it is available. They aim to have patients keep seeing their own doctors; they’re not trying to take over that job.
“Our team is there to assist,” Dr. Erola tells. “The nurse practitioner works with the patient’s home physician. Our goal is to be an extra layer of care to coordinate with the patient and family.”
Often the first items of business, so to speak, is a family meeting. The patient may be at home, in a skilled nursing facility, or in assisted living, according to Tracy Moore, MSN, NP, palliative care nurse practitioner with Lower Cape Fear Hospice. While she might see a patient at any stage of illness, her preference is to be there from the initial diagnosis. “The sooner I get to know you and your family, the better I can help,” she tells. Moore wants to learn the patient’s and the family’s priorities. “It’s all about what’s important to them,” she continues. “I get a history, get to know the family, talk about things we can help with and if they need other resources, for example, maybe light house cleaning.” From the outset, she works in conjunction with the patient’s primary doctor.
A nurse practitioner for 1y7 years, Moore appreciates how palliative care allows her to do more for patients than she’s ever been able to do. She has worked with several patients who are at home, taking advantage of some of the new immunotherapies for cancer. While such therapies may not cure cancer, they provide a much better quality of life. Because the patients do not qualify for hospice care, the palliative care is very beneficial. “It’s incredibly rewarding,” she adds. “Some of the younger people are better candidates for clinical trials or better chemotherapies.”
Goal-setting may include whether to stay in assisted living or to move to a facility with a higher level of skilled care. It may be to coordinate symptom management between the assisted living-care givers and the family doctor. It can help them to stay in their setting, and not have to move. Or it can be a carefully planned and, therefore, less stressful move.
Much of the work she does involves individuals who have received excellent care in the hospital but must go home or to a rehab center while they are still in need of assistance.
When the situation is terminal, but long-term, it’s important to discuss with the family what’s most important. “Is it quality of life or to be alive as along as possible?” Moore asks rhetorically. “Because everyone’s values are different. I can’t impose my values on another family. The things that make us individual and unique are things we continue to have with us in illness and times of crisis.”
The goal of palliative care is to promote quality of life for patients regardless of their age or stage of illness. “One of my mentors calls us the ‘Care Sherpa’ because we guide people through the process,” according to Dr. David Free, director of Palliative Care Services for LCFH. They coordiante quality patient care, family support and communications across the healthcare continuum. “We’re the hub that gets groups of providers talking to each other. We have the time to weave those things together and become a guide through serious illness,” Dr. Free notes.
A critical piece of their care is having important conversations: goals and outcomes, advanced directives and other legalities. Some providers are reluctant to approach such subjects. Yet, a recent medical journal article suggested patients expect their physicians to start the discussion.
“A lot of families find it to be welcomed,” Dr. Free says. “An advanced directives discussion includes the natural direction of the illness and key decisions that might need to be made. For example, if they have dementia, they need to have a discussion before they lose the ability to voice their goals.”
A patient’s wishes may change over time, as well, so it’s important to keep the dialogue open. “Begin the Conversation is one of our initiatives to get people talking,” he tells.
The group takes place the third Friday of each month at Phillips LifeCare and Counseling Center (1414 Physicians Dr.). They discuss strategies on how to reduce family stress, and improve quality care, as well as instructions on legal documents needed to ensure the wishes of the patient are met.
“There is a huge knowledge deficit about what palliative care is,” Dr. Free says. “Many think it’s the same thing as hospice.”
Essentially, it is an effective extra set of eyes and ears to improve patient care and coordination. LOL
WHAT IS PALLIATIVE CARE?
Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family
Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment