As medical advances have transformed many once-fatal diseases into chronic conditions that can be managed, helping us to live longer, what sometimes gets lost in the shuffle is the matter of living better.
Helping patients maintain their quality of life while managing a serious disease is the purview of palliative care.
“Today we have newer treatments for conditions such as cancer, HIV, heart and neurological disease that extend people’s lives for months and years,” explains Kiarash Noorizadeh, MD, who is Board Certified in Palliative Care.
“But just because we’re living longer doesn’t necessarily mean we have a good quality of life,” he says. “Medications can cause untoward side effects, and the disease itself can cause unpleasant symptoms. So a patient’s need for palliative care may start from the physical. They may have pain, shortness of breath, sleeplessness, loss of appetite or nausea that needs to be managed.
“And it’s not just a person’s physical well-being that can be affected by illness,” he continues. “Living with a chronic or potentially life-limiting disease also can have a spiritual, existential or psychosocial impact on the patient as well as the family, triggering depression, fear or withdrawal.”
Bringing together resources to address all these issues, tailored to the unique needs of the individual patient and family, is what palliative care is all about.
A team of caregivers
“We assemble a team to provide whatever the patient needs,” Dr. Noorizadeh says. “This team can include physicians, nurses, social workers, physical and occupational therapists, and pharmacists.
“We also work with the patient’s primary care physician and any specialists involved in the patient’s care,” he continues. “Because we usually deal with patients who have multiple medical problems and specialists, it’s important for us to be in touch with them all.
“Then we come up with a plan that’s individualized for each patient, focused on their goals and preferences,” he adds. “Plus, the palliative care ‘patient’ isn’t just the individual, but also their family, because the illness affects them, too.”
Palliative care really starts with a conversation.
Giving people choices
“We have to give people choices about how they want to live,” says Karen Lichtenstein, RN, BSN, who works with Dr. Noorizadeh. “This involves talking about the seriousness of their illness, their treatment choices, how they define quality of life, and what makes their life meaningful.
“These aren’t always easy conversations to have, and the anxiety of an illness and the losses it imposes can feel overwhelming,” she continues. “But our goal is to help people realize they do have choices. We can offer suggestions, interventions and hope that they can live as fully as possible for as long as possible.
“We also will broach the subject of death and dying, and what their wishes are around that,” Lichtenstein adds. “It’s good to talk about this ahead of time, to make your wishes known while you are still able to do so.”
“We walk with them through the difficult decisions that need to be made at this stage of life,” Dr. Noorizadeh says. “And we stay with the patient until the very end.”
The difference between palliative care and hospice
One of the biggest misconceptions about palliative care, even among some physicians, is that it’s simply another name for hospice care.
“When you go into hospice care, it means foregoing all curative treatment,” Dr. Noorizadeh says. “The focus in hospice is on keeping the patient comfortable, not treating the illness.
“With palliative care, however, you can continue to undergo all the curative treatment that’s available to you, for as long as it’s appropriate,” he points out. “For example, if someone with cancer entered hospice, this patient would stop having chemotherapy. But with palliative care, our team works with your oncologist while you continue to receive chemo. We help to manage any side effects you may be experiencing.”
Also, hospice care generally is provided — and covered by insurance — for six months or less. Palliative care, on the other hand, has no time limit; patients may avail themselves of palliative care services for as long as they require them. And it is covered by most insurance plans for the duration.
A focus on comfort
“If we first see a patient when they are in the hospital, we strive to make their transition to home as smooth as possible,” Dr. Noorizadeh says. “And we will do everything we can to manage their ongoing care in the comfort of their own home.”
For example, Dr. Noorizadeh received a call from one of his colleagues whose mother, who has Alzheimer’s disease, was repeatedly being brought from home to the emergency department and hospitalized to treat a recurrent urinary tract infection. Each visit was disruptive and confusing for the elderly woman.
“We met with her in the clinic and established a relationship, then connected her with a home health agency,” Dr. Noorizadeh relates. “Since then, if there’s any sign of infection or dehydration, a nurse comes to her home, draws labs and, if needed, antibiotics are administered at home. She hasn’t been admitted to the hospital since, sparing her the upset and confusion of hospitalization.”
He acknowledges that given an older population remaining at home isn’t always an option for some patients.
“In these cases, we can still provide palliative care in a skilled nursing facility,” he notes. “Anyone who is dealing with a serious illness can benefit from palliative care,” he stresses. “Our aim is to help you have a good life, every step of the way.”