Palliative care and hospice care have a number of things in common. Both are designed to help people living with a serious illness and to improve their quality of life. But it’s important to understand that palliative and hospice care aren’t the same thing.

“Palliative care improves the quality of life for people with serious or chronic life-limiting illnesses such as COPD, heart failure, cancer, renal disease and dementia,” said Nicole Apprill, a nurse practitioner with LMH Health’s Palliative Support Services. “We provide this care in concert with a patient’s health care treatment in order to help improve their quality of life.”

Palliative care is based on the needs of the patient and not their prognosis. It’s appropriate at any age and stage of illness and can be provided along with curative treatment. It includes things like pain and symptom management, patient and family education, spiritual and psychosocial support, discharge planning and assistance with advance directives

Apprill said that palliative care providers identify what’s important to the patient, their goals for their care and how they would like to be taken care of. Just like a cardiologist manages heart failure and adjusting medications, palliative support addresses the problems associated with serious health conditions to help improve patients’ quality of life.

“The other thing we do is a lot of supportive communication,” she said. “If you’ve got multiple consultants caring for you, how much of that information have you absorbed and understood? We help put those pieces together so you and your family understand what’s going on and where you’re at in the disease process.”

What can I expect?

Three nurse practitioners and two nurses provide palliative care for patients at LMH Health, both in the hospital and in the outpatient clinic at Palliative Support Services. The team works alongside primary care and other health care providers. Most palliative care referrals occur as a result of consultations during an inpatient hospital stay, but the team can see patients in its office as well.

During your first meeting with a palliative care provider, they’ll have a number of questions for you.

“Palliative care is very patient-centric. I want to get to know you, what makes you tick and how I can help. I want to know about your support system and how you’ve been feeling. We’ll talk about your condition, what you understand and then make a plan,” Apprill said. “We need to address the urgent things first, like uncontrolled symptoms, then work to identify and determine how best to support your goals for living.”

How often do patients meet with the palliative care providers? It’s different for everyone. Some patients meet with palliative care providers every couple of weeks, while others may need to be seen more or less frequently.

“We really try to be accessible as much as possible. Our palliative care team is here Monday through Friday and we want to be available so we know our patients are in good shape and supported,” Apprill said.

Spiritual and physical

Palliative care work doesn’t fall solely on the shoulders of nurses and nurse practitioners. At LMH, the team relies heavily on case managers and spiritual care manager Robin Colerick-Shinkle. She offers emotional, spiritual and social support to patients and their families.

“Palliative care patients often have specialized needs,”

Colerick-Shinkle said. “Due to the often long, chronic and steady decline of patients, there are spiritual distresses that emerge. Spiritual care isn’t just religious care. It looks at what gives a person meaning in their life; what gives them purpose; what their beliefs and values are. Sometimes religion is part of these things and sometimes it’s not.”

Colerick-Shinkle said the palliative care team lets her know about patients and families who are having a hard time, as well as those who are going to begin hospice or comfort care. She then follows up with a visit.

“We work to communicate with all providers to ensure patients receive the best care,” Colerick-Shinkle said.

Misconceptions about palliative care

Unfortunately, many individuals with chronic illnesses don’t receive palliative care services, and that might be because of misunderstandings about what palliative care is.

Many people believe that palliative care is hospice care. While palliative care was born from the hospice movement, a key difference is that hospice is provided for a person with a terminal illness whose doctor believes they have six months or less to live if their illness runs its natural course. Palliative care is provided to all patients with serious illness, regardless of their prognosis.

“Like palliative care, hospice provides comprehensive comfort care, as well as support for the family,” Apprill said. “Once an individual is placed on hospice care, attempts to cure the person’s illness or prolong their life are stopped. The focus is solely on maintaining comfort, quality of life and supporting the patient and family.”

Another common myth is that palliative care is not covered by insurance. According to the National Hospice and Palliative Care Organization, palliative care is covered by most insurances, as well as Medicare and Medicaid, though some procedures and medications may not be covered. Talk with your insurance provider to see what benefits are available to you.

Planning ahead

While palliative or hospice care may not be something you need right now, there are a few important steps you can take now. Naming a designated health care proxy to make decisions for you is an important step.

“Whoever you select, you need to sit down and have a conversation about what’s important to you,” Apprill said. “It doesn’t all have to be about what life support measures to take or if you’d want to have CPR. Is it sitting with your family and being able to communicate? Being able to go outside and see the sun? It could be any number of things.”

Apprill said it’s important for the proxy to understand how you want to be cared for if your body is no longer able to respond to treatments for your illness.

“For someone young and healthy, would you be okay with a feeding tube and tracheotomy if you sustained a traumatic brain injury? Or is there a point in time where you’d want those efforts to end?” she said. “It’s important to think about scenarios like that.”

Having an advance directive is also helpful. This legal document allows you to express your wishes related to end-of-life care. According to the National Institute on Aging, you can think of it as a living document — one that you can modify as you get older or as your health or your viewpoints change.

Talk with your doctor about advance directives, the types of decisions that might come up in the future and about designating a proxy. You might even be able to complete the paperwork in the clinic. You can also complete this document at home, but be sure to either have it witnessed by two people or signed by a notary.

— Autumn Bishop is the marketing manager and content strategist at LMH Health, which is a major sponsor of the Journal-World’s Health section.