Many people think palliative care is only for those suffering from an illness at the end of their life. But palliative care is for any stage of life, providing specialized medical care to anyone who is living with a serious illness that affects their quality of life and ability to do daily tasks.
Its main goal is to provide relief from symptoms and stress, while improving the quality of life for both the patient and their family.
It can also help people live longer.
“Palliative care is care that addresses what matters most to patients when facing complex medical decisions and serious illness,” says Julia Burdick, MD, an internal medicine physician at Dartmouth Hitchcock Clinics Concord.
If you are suffering, asking your primary care provider about palliative care could benefit you in ways you may not expect, explain Burdick and her colleagues Henry Feng, MD, and Matthew M. Wilson, MD, who specializes in palliative medicine at Dartmouth Health Medical Center (DHMC).
Here’s what palliative care can provide you.
What is the difference between hospice care and palliative care?
Hospice care and palliative care both include pain and symptom relief. A big difference between them, though, is that hospice care is specifically for people thought to have six months or less to live and who want their treatments to focus only on those things that help them feel better.
Palliative care is for any stage of a serious illness and can be provided by your whole healthcare team.
“Palliative care support is provided along with illness-focused treatment and continues through the continuum of a person's healthcare journey,” says Burdick.
An important part of palliative care is also advanced care planning (ACP). ACP is a process of defining and documenting your values and preferences to guide future healthcare and help you stay in control of how you are cared for and how you want to live your life.
“This is an opportunity to explore your understanding of your illness, your hopes and fears, and your symptoms that are affecting your quality of life. Research shows that engaging in these conversations can help you make important decisions and have more control over the care you receive,” says Burdick.
“Treatment never stops, so people do not need to be concerned about suddenly not getting the care they need or want,” adds Wilson.
What are the benefits of palliative care?
“Modern medicine can keep a person alive,” says Feng, who is also a clinical assistant professor at the Geisel School of Medicine at Dartmouth. “But are they enjoying their quality of life?”
If you are suffering from serious illness, palliative care can:
- Help you live longer
- Improve your quality of life by helping you better manage symptoms like pain, disrupted sleep, or lack of sleep
- Make daily tasks easier
- Reduce your healthcare-related costs
- Get you support for your spiritual, emotional, mental health, and physical needs
- Provide assistance and support to your caregivers
- Help you make informed decisions related to ACP
But most people don’t know how palliative care could help them.
According to this study published in Cancer Epidemiology, Biomarkers & Prevention, an estimated 89% of Americans have inadequate knowledge of palliative care, often mistakenly equating it solely with end-of-life or hospice care.
And yet, as reported in this National Institutes of Health (NIH) article and others, any person living with serious illnesses—such as cancer, heart disease, lung disease, or kidney failure—could benefit.
Meanwhile, not having a palliative care plan can be detrimental to a personal’s ongoing health in many ways.
For example, if you don’t have a plan, your loved ones could be suffering from unnecessary stress, or your symptoms might unnecessarily land you in the emergency room.
Getting better palliative care
Feng and Burdick believe getting access to palliative care could be made a lot simpler.
With the support of Dartmouth Health, they have been working on a model that brings together palliative care specialists and primary care doctors to better identify patients who would benefit from palliative care intervention, according to this article in Vitals Magazine.
They are working with physicians, advanced practice providers, nurses, medical assistants, resource specialists, and home health agencies in developing the team-based care model to better address the complexity of care needed when patients face serious illness.
Through this collaboration, they aim to facilitate ACP conversations and better address patient symptoms, mobilize resources, help support care partners, and secure referrals to specialist palliative care.
When the healthcare team knows what matters most to patients and families, a care plan can be developed that reflects a person’s goals and values. Addressing symptoms that most affect quality of life—such as pain, fatigue, shortness of breath, or depression—can mean fewer preventable episodes of hospital-based care. "Working over time with a palliative care focus also often leads to reduced care partner stress and more time spent at home with loved ones,” Burdick points out.
The importance of palliative care in primary care
Primary care is key to the model that Burdick and Fenn have developed.
Enhancing palliative care skills within primary care and building a system to support your palliative care needs allows you to be more comfortable asking for help if you are struggling, says Burdick.
“We believe that the primary care clinic is where holistic patient-centered care is most effectively provided,” she adds. “In Concord, we are working to implement a process of proactively identifying patients with serious illness and providing patients the opportunity to participate in advanced care planning and goals of care conversations that are documented in the medical records,” she says.
Through their program, they are also developing a new standardized screening tool, which can be used when a patient is discharged from the hospital.
This screening tool can help create a care roadmap for a wide range of healthcare providers, including specialists, home healthcare workers, and visiting nurses. The initiative, Feng and Burdick hope, will help raise awareness, increase access, and improve patient and provider understanding of palliative care, as well as allow patients to get support better tailored to their individual needs.
“Patients don’t know this type of care is available, so we can also reach out to them if they’ve been in and out of the hospital a lot,” Burdick says. “We can offer them a better layer of support to keep them out of the acute care system. If there’s good communication between interdisciplinary care teams, there’s more opportunity to treat the patient at home.”
What should you do if you think you or a loved one might benefit from palliative care?
The most common places people receive palliative care services are: primary care clinics, outpatient palliative care clinics, other specialist clinics (such as oncology), at home, in a nursing home, or in a hospital.
So, if you are struggling with a chronic or serious illness, do not hesitate to talk to your healthcare provider about whether palliative care might be appropriate for you.
If your loved one is struggling with their illness, encourage them to do the same.
