Palliative care: Get the facts
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 help improve their quality of life. But it’s important to understand that palliative and hospice care aren’t the same thing. So what is palliative care?
“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,” explained Nicole Apprill, a nurse practitioner with LMH Health’s Palliative Support Services. “We provide this care in concert with a patient’s healthcare 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. The team provides:
- Pain and symptom management
- Patient and family education
- Family meeting facilitation
- Spiritual and psychosocial support
- Discharge planning
- Assistance with advance directives
Apprill said that the team identifies what’s important to the patient, goals of care and how you’d like to be taken care of. Just like a cardiologist manages heart failure and adjusting medications, palliative support addresses the symptoms associated with your serious health condition to help improve your quality of life.
“The other thing we do is a lot of supportive communication. 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,” she said.
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. Overseen by consulting, collaborating physician Marc Scarbrough, MD, the team works alongside your primary care and other healthcare providers. Most palliative care referrals occur as a result of consultations during an inpatient hospital stay, but the team is happy to see you in their 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 explained. “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.”
Once a plan has been established, the frequency you meet with the care team is largely dependent on your disease track. 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. 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. Due to the often long, chronic and steady decline of patients, there are spiritual distresses that emerge,” she explained. “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 shared that she stays in close communication with the team at Palliative Support Services. They let 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 illness don’t receive palliative care services because of misconceptions that exist. 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, while 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. 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,” Apprill explained.
Another common myth is that palliative care is not covered by insurance, adding an additional cost for you. 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.
I don’t need care now, but what should I do to prepare?
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 healthcare 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. It doesn’t all have to be about what life support measures to take or if you’d want to have CPR,” Apprill said. “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 continued by explaining that 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? It’s important to think about scenarios like that,” she said.
Having an advance directive is also helpful. This legal document allows you to express your wishes related to end-of-life care. The National Institute on Aging explains that you can think of it as a living document – one that you can modify as you get older, your health or your viewpoints change.
Talk with your doctor or the team at Palliative Support Services about advance directives, the types of decisions that may come up in the future and who you’d like to designate as a proxy. You may 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.
“Whether you need help to manage your symptoms due to a serious illness, have questions about advance directives or need someone to talk to about planning for your needs, the Palliative Support Services team is here and we’re happy to help,” Apprill said.
LMH Health Palliative Support Services is ready to assist you and your family to improve your quality of life when you're facing a chronic or serious life-limiting illness. Call 785-505-5623 to see how we can help.