by: Brian Donnelly
Chronic and terminal illnesses are devastating. Naturally, families and caregivers want to help ease any suffering, but there is often confusion about how best to help during these difficult times, says Tara Liberman, DO, executive director of Northwell Health’s Hospice Care Network.
Palliative care and hospice are two options that can help patients and their families navigate a diagnosis like cancer, certain types of heart disease, dementia or other complex conditions. Both services are dedicated to enhancing quality of life and managing pain — physical, emotional, social and spiritual — but there are some key differences.
To help connect families with the right kind of care at the right time, Dr. Liberman, explains what everyone should know about palliative care vs hospice.
"The main difference between palliative care and hospice is that palliative care is a subspecialty of medicine and can start at the time of diagnosis for advanced illnesses, whereas hospice is an insurance benefit available only to those diagnosed with a terminal illness and have less than six months to live,” she said. “But, whether you're seeing a palliative care or a hospice specialist, the goal is always to identify the cause of someone's discomfort, then find different ways to relieve that pain.”
A quick history of palliative care and hospice
In 1974, the first hospice in the United States was established in Branford, Connecticut — seven years after what is considered the first “modern hospice” opened in London. Recognizing the immense suffering of those living with and dying from serious illnesses, leaders of the hospice movement of the time broadened their focus to include not just physical pain, but the emotional, social, and spiritual dimensions of distress — which often go overlooked. This concept of “total pain” is a pillar of both hospice and palliative care programs today.
Also in 1974, the term “palliative care” was coined and later recognized as a distinct specialty in 1990 by the World Health Organization (WHO). Today, palliative care is offered in the hospital setting, outpatient clinics, and doctors’ officers as well as in the home. Hospice is one example of palliative care.
Hospice was established in 1980 as a Medicare benefit by the U.S. government.
What is palliative care
Palliative care is a subspecialty in medicine that allows for patients diagnosed with an advanced illness to be cared for throughout their illness with a special focus on managing symptoms of the disease and treatment, and improving quality of life. “Whether they've just been diagnosed, are in the middle of their treatment, or the end of their life, palliative care is an overarching support system that can help guide and treat patients with an advanced illness,” Dr. Liberman said.
Does Medicare cover palliative care?
Some types of palliative care are covered by Medicare Part B, Medicaid and some private insurance. Not all costs are covered. Find palliative care near you using the National Hospice and Palliative Care Organization.
When should someone be offered palliative care
Patients can ask a healthcare provider to refer them to a palliative care specialist, but more often their doctor will make that suggestion. “And usually it's for a disease that may either be advanced, and their symptoms have acutely changed the way that patient is living, like shortness of breath, pain, anxiety and other psychosocial issues,” she added. “That will prompt their care team to have that conversation with a patient.”
When someone is diagnosed with serious conditions like cancer, Alzheimer’s disease or heart failure, Dr. Liberman recommends that providers bring in palliative care specialists earlier. “This just adds another layer of support for a very vulnerable population facing a life-changing disease, as well as expertise and training that other care teams may not have at their fingertips.”
Studies suggest that early use of palliative care can not only improve the quality of life, but it can also even extend life. A 2010 study of patients with metastatic non-small cell lung cancer found that those who received palliative care soon after diagnosis lived longer despite receiving less aggressive care at the end of life, compared with another group who received the standard of care.
“Patients and family may be hesitant to have a palliative care team come in because they're worried that means that they have a terminal illness,” said Dr. Liberman. “But that's not always the case.”
Patients can continue treatments that may cure their disease while also receiving palliative care, which typically occurs in an inpatient setting like a hospital or nursing home. Outpatient settings may include a clinic, doctor’s office, or at-home palliative care. Regardless of the setting, a palliative care team will speak to the patient about the goals of care to help them better understand their treatment options.
If treatments for a patient’s disease stop working, or the patient decides to end life-saving measures, the palliative care team may place more emphasis on comfort care, or refer them to hospice care.
Who makes up a palliative care team?
Working in coordination with the primary care physician or specialist, a palliative care team is traditionally made up of a board-certified physician, nurse practitioner, social worker and chaplain, as well as nutritionists and volunteers. These teams vary based on the patient’s diagnosis and needs.
A critical part of this care, Dr. Liberman emphasized, is taking the time to listen to a patient’s story. “Patients want to be heard, and they want their medical team to be honest with them about what the future may look like, and how they can support them through the journey. So, we spend the time to understand where the patient and their loved ones are coming from and then meeting them where they're at.”
What is hospice care?
Hospice care is for patients diagnosed with a terminal illness and determined to have less than six months to live by at least two physicians. They will then refer that patient to a hospice program, which offers support and comfort for those nearing the end of life.
Primarily, hospice is provided to patients with cancer, but can benefit anyone with a serious illness that meets the criteria. While many people associate hospice with the weeks or last days of life, Dr. Liberman emphasized that the benefits are meant to be used for months and “is really about increasing comfort and even extending someone’s life with that extra layer of support.” This will enable them to maximize the many benefits of hospice, which include:
Nursing visits
Social workers who assist with finances and emotional support
Personal care by trained hospice aides and volunteers
Securing medication and medical supplies
Hospital bed
Commode
Dietary counseling
Family and caregivers support programs (including bereavement)
24/7 staff member assistance
Most hospice is done in the patient’s home with their family. Many hospice programs have an inpatient facility in a region for those who require a higher level of care, but may also assign patients to nursing homes or assisted living facilities.
The goal, Dr. Liberman said, is always to allow patients and their families to remain in their home and be cared for in totality by high-level physicians, nurses, social workers, chaplains and volunteers.
“This team is on call 24/7 and is dedicated to caring for the physical, psychosocial and spiritual needs of the patient and their family,” she said.
Does Medicare cover hospice?
Medicare covers 100% of the costs for hospice care. Medicaid and most insurances also cover it, but Dr. Liberman said more than 90% of the patients utilizing Northwell’s Hospice Care Network are on the Medicare benefit. “If a particular private insurance does not cover hospice, not-for-profit organizations like Northwell Health will work with patients who need this important service.”
Like palliative care, patients on hospice can keep their doctors, specialists and other caregivers like a personal aide. But, treatments to cure their illness are stopped.
“We continue to care for the patient appropriately with medications that are needed for their disease and support them,” Dr. Liberman said. “If they require some kind of medication for symptom management like an opioid for shortness of breath or pain, we will provide that in a reasonable way. But we do not initiate unless it is necessary.”
When to consider hospice
Every family should have a conversation, even at a young age, about end-of-life care. Family and caregivers may have to make these decisions when a loved one is no longer able. Planning ahead will enable older adults to communicate their preferences about life-saving treatments and prevent unwanted hospital admissions, invasive tests or procedures at the end of life.
“You want to make sure that people understand your wishes and what most matters to you,” Dr. Liberman said. “Starting hospice early may provide months of meaningful care and quality time with loved ones.”
Hospice patients sometimes change their minds about pursuing life-saving treatments for their illnesses and want to know if they can come off hospice. “The answer is yes,” explains Dr. Liberman. “And if that treatment, for example, a round of chemotherapy for cancer patients, doesn’t work, they can go right back on hospice.
“We understand this is a very fluid conversation and we want to make sure that we’re there to support the family through whatever process they’re in.”
Comments