Dispelling Hospice and Palliative Care Myths
A behind-the-scenes look at Southcoast VNA’s Supportive Care Services
Melanie Semple is manager of the Hospice and Palliative Care program at Southcoast Visiting Nurse Association (VNA). Here, Melanie discusses the value of supportive care services including hospice and palliative care, while dispelling myths associated with receiving care.
Health+: How would you describe supportive care at Southcoast?
Melanie: Supportive Care Services encompass everything we do across both the hospice and palliative programs. Our patients are individuals who have life-limiting illnesses and are often in and out of the hospital frequently. The big difference between the two programs is that palliative care patients are still seeking curative treatment, whereas when patients elect hospice care, they have made the decision to focus on comfort and quality of life.
Palliative care and hospice care take place in the patient’s home, in nursing homes, in skilled nursing facilities as well as in the hospital.
Health+: What illnesses or conditions do you typically see in your patients?
Melanie: Anyone who is coping with a serious illness can receive supportive care. Many have cancer, but we also see those with cardiac disease, COPD and Alzheimer’s or dementia. We also care for people with renal failure, Parkinson’s and Amyotrophic Lateral Sclerosis (also known as ALS or Lou Gehrig’s disease). Our skilled staff is prepared to address concerns related to all diagnoses.
Health+: Who makes up the hospice and palliative care team?
Melanie: Our skilled staff includes certified hospice and palliative care nurses who provide care coordination and symptom and medication management; home care aides who assist with personal care; and medical social workers who assist with social issues, outside services, additional help in the home, insurance information and funeral planning. In addition, our chaplains are available for non-denominational spiritual support and our bereavement manager provides individual counseling and community support group meetings, often reaching out to families before their loved one dies and for 13 months after.
We also have over 100 volunteers who get involved in many different ways including providing companionship for patients and respite for families. Some volunteers provide alternative therapies (pet therapy, aroma therapy, Reiki and guided imagery) and others assist with bedside Veterans ceremonies. We also have Concordia Choir, a special group of volunteers who visit patients and sing songs of meaning to them.
Health+: How do you initially get involved with a patient for palliative care?
Melanie: Charles Hackett, MD, MPH, Medical Director of Southcoast VNA’s Hospice and Palliative Care program and a nurse practitioner are available for consultation in patients’ homes. The consult visit helps with symptom management, so it can be requested by local physicians, home care nurses or hospice nurses. Or maybe an oncologist who has a patient with a lot of symptoms that need to be treated. They will consult with Dr. Hackett, and he’ll go to where the patient is and make recommendations based on the individual’s symptoms.
We typically get referrals from various sources, usually a doctor’s office or a Southcoast hospital. At that point, a registered nurse goes out for a visit. She does the initial assessment and admits the patient, and works with the patient and his or her family to create a care plan.
Depending on the patient’s needs, the nurse will facilitate bringing other services into the home. If a social worker or a home care aid is needed, the nurse will bring in those individuals. If it’s physical therapy or occupational therapy, then she will coordinate with the appropriate therapists and get them involved.
They also set up a treatment plan in which the nurse and each required discipline determine how often they will visit the patient. Generally, those visits take place two or three times a week, but there are some patients who require daily visits if they have special needs and require monitoring of IV antibiotics, for example, or a wound that needs frequent dressing change.
Nurses are available 24 hours a day. Telemonitoring is another palliative care service that the assessing nurse can initiate. And we also have pharmacy services, so all of the medications and medical supplies come from us, and we deliver them right out to the patients.
For all these different disciplines, the nurses act the point person. They are the case managers, so they coordinate the case the whole time the patient is receiving service.
Health+: How does that process differ for hospice care?
Melanie: It’s pretty similar. When a patient is referred to hospice, the physician certifies that if that patient’s disease progresses at its expected trajectory, the patient has a life expectancy of six months or less. That’s what qualifies an individual initially for hospice. And then, like we do for palliative care, a plan is put in place, but the types of disciplines that are brought in are for physical and emotion support only, not curative treatment.
Health+: What are some of the big challenges you face in that process?
Melanie: Often it’s difficult for patients to talk about hospice. Sometimes just the word “hospice” is too much for them to deal with. So part of the challenge for us is to dispel all the myths associated with hospice care. Very often patients and families think that when the receive hospice it means they are dying immediately, which is usually not the case. For the same reason, some individuals avoid hospice because they don’t want their families to think they’ve given up. So patients deal with a lot of guilt and fear when they should really be focused on the time they have left.
Our job is to provide support in the way that’s best for each individual. We stress that we are there to help them get the best quality out of whatever time they have left and allow them to enjoy that precious time with their families and do what they want to do with that time. That’s a really big thing.
Health+: How do you approach those conversations with patients?
Melanie: There is a good amount of psychosocial care that we offer patients. For many, they have just received news that they a serious illness, like cancer, or are just beginning their treatment. So it can be a very difficult time for both the patients and their families.
We provide them with a lot of supportive care and a lot of opportunities to talk things out and ask questions—and get answers to those questions. We strive to help them process and better understand what’s happening to their bodies and what to expect through their illness and treatment. Through this discussion, we work with patients to start to build a care plan that includes details related to their care as well as transportation needs and who’s going to be their primary caregiver. Families of patient are involved in this process to the extent that the patient wants them to be involved.
We supply our patients with all the information they need to make the decisions that they have to make. What’s critical to our program in that respect is the interdisciplinary team approach. We utilize the expertise of all the disciplines to make sure that each patient receives everything he or she needs to receive the very best care we can offer.
For more on Supportive Care Services, visit Southcoast’s Visiting Nurse Association or call 508-973-3200.