There is a lot of misunderstanding around the term palliative care. Many people believe it means hospice, but it is so much more than that. We talked with Anna K. Saulitis, a licensed clinical social worker at Rush University Medical Center, in hopes of clearing up this common misconception.
Q: What Is the Difference Between Palliative Care and Hospice?
All palliative care is not the same as end-of-life or hospice care. While both services aim to facilitate symptom management and relief from suffering, hospice is a very specific type of palliative care and the terms should not be used interchangeably. While hospice care is a type of palliative care, not all palliative care is or will be hospice care.
Hospice care is for patients who are not expected to survive their illness or recover from their condition and are nearing the end of their life.
Hospice is recommended when a condition or illness gets to the point when treatment can no longer cure or control it or the benefit of treatment is outweighed by suffering or burden of care and the patient or family chooses to stop further interventions. For a person to be eligible for hospice care in either of these situations, a physician must certify the patient has a terminal diagnosis, meaning they are not expected to live longer than six months with the usual course of their illness or condition.
Unlike hospice, palliative care is not limited to people who are nearing the end of their life or have a terminal diagnosis. Palliative care happens at any time during a person’s illness, is not tied to any expected outcome (whether a person is expected to live or pass away) and can happen alongside and in coordination with curative care or care that prolongs or lengthens life.
It is true that people who have life-limiting conditions or illness that will lead to the end of their life receive palliative care and transition to hospice when it is needed. However, it is also true that some people with acute periods of illness recover, are cured or achieve optimized management of symptomatic disease and may no longer need palliative care services after some time.
Many people, including some who work in the medical field (!), mistakenly believe palliative and hospice care are one in the same. It isn’t easy to talk about (or think about) what could happen if illness gets worse or treatment doesn’t work—combine this fear with a common misunderstanding of what palliative medicine can offer and it’s easy to see why people may be hesitant to talk about palliative care.
Q: What Exactly Is Palliative Care?
Palliative care is specialized medical care providing physical, emotional and spiritual support for people living with chronic conditions or serious illness. Palliative care helps people manage physical symptoms and emotional stressors and focuses on patient’s goals for care, values and what’s important to them. It also aims to improve quality of life for both the patient and their family.
It can and should exist as a complement to a patient’s overall treatment plan—working with a palliative care team does not mean a person has to stop or give up other aspects of their recommended treatment or care, unless they decide this is what they want to do. People receiving palliative care can also receive other types of curative or life lengthening treatments like dialysis, chemotherapy, and radiation. Palliative care recognizes the burden and challenge of managing a chronic disease or severe illness and focuses on reducing physical and emotional suffering to improve quality of life.
Q: Who Should Receive Palliative Care?
Any person who has a serious, complex, progressive or life-threatening illness or condition may benefit from palliative care, including children and young adults. As mentioned before, this also includes people who are expected to make a full recovery and those with lifelong or chronic conditions.
A person can and should be referred for palliative care just like they would for any other specialty. It is ideal for this connection to happen at the time of diagnosis or early in treatment and should not be deferred until a person’s disease progresses or they are nearing end of life—the services of palliative care and focus on quality of life should be available from day one.
Palliative care helps patients and families to live full and meaningful lives despite the challenges of illness and disease. By managing symptoms, reducing suffering and helping patients and families better navigate their experience of their care, palliative care helps people live well while living with a chronic disease.
Q: What Makes Palliative Care Essential?
Palliative care focuses on improving quality of life. People living with a serious, chronic or progressive diseases or conditions deserve to live the best possible life despite their diagnosis. There are many factors related to living with a health condition that can impact quality of life: pain, breathlessness, sleep, mental wellness, loss of ability, financial strains, family concerns and more. Palliative care focuses on reducing symptom burden and physical distress, in addition to supporting the social and emotional impacts of living with illness.
In their work with the people in their care, palliative care providers focus on values, hopes for the future, goals of care and what is important to the patient and family. They help to advocate for patient and family voices throughout the course of treatment, facilitate and support decision making and provide emotional and spiritual help for people experiencing the stress, anxiety and fear of navigating illness.
A palliative care team may include nurses, social workers, chaplains, psychologists, child life specialists and others who collaborate with the patient and family to co-produce a plan aligned with treatment goals and disease management needs. Importantly, palliative providers and teams collaborate with other medical specialties caring for the patient and do so through the course of treatment and care.
You can visit our Lung Disease Lookup to learn more about managing your chronic lung disease and call our Lung HelpLine to speak with a medical professional about your treatment options, including incorporating palliative care.
Blog last updated: December 4, 2020