Featured Guest Blogger: Diane E. Meier, MD, FACP
Healthy People 2010 defines health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” Why is this important? Because several studies have shown that poor health is highest among patients with low health literacy.
For people with serious and chronic illness that causes functional or cognitive impairment, this is especially problematic. According to NALS, 75% of Americans who reported a long-term illness had limited literacy.
People facing serious illness cannot make good decisions with their healthcare team unless they understand what to expect from the illness or illnesses over time; how these changes are likely to affect their day-to-day functioning and quality of life, and that of their family; and the pros and cons of the available treatment options. This is complex information but it can be conveyed in a manner that is clear, easy to understand and offers practical guidance in the context of what is most important to the individual patient and family. Information needs to be free of confusing medical terms, and it should be offered in a variety of ways, including audio and visual formats.
Attention to health literacy issues is also critical to the shared decision making process palliative care professionals incorporate daily. Clear printed materials, websites and audio visual tools, easily understood by all audiences, are essential to supporting medical professionals trying to help patients and families understand treatment options and make tough decisions.
Findings from a recent public opinion poll of over 900 registered voters conducted by the Center to Advance Palliative Care (CAPC) and the American Cancer Society (ACS-CAN) showed that one of the biggest concerns people reported was lack of information. Over half of people polled noted they leave a meeting with a health provider feeling unsure about what was said and what they are supposed to do next. Half the respondents also said that doctors do not spend enough time talking with, or listening to, patients and their loved ones.
The same poll revealed that most people had never heard of the term palliative care even though over 70% of the respondents reported serving as a caregiver for a seriously or chronically ill loved one.
So what is palliative care and why should every American know what it is and how to get it?
Palliative care is specialized medical care for people with serious illness. This type of care is focused on providing patients with relief from the symptoms, pain and stress of a serious illness – whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment. In practice, palliative care teams are expert in treatment of pain, anxiety, depression, and other commonly occurring symptoms.
Palliative care teams understand the many cracks in the U.S. healthcare system and can help patients and families navigate it by serving as an advocate and an extra layer of support between patient and family and the larger system.
Most important of all, palliative care doctors, nurses, social workers and chaplains are expert communicators and listeners. Palliative care teams understand that listening, often for long periods of time, is necessary to truly understand the person living with the illness, and the family members trying to help and support them. Listening carefully is central to understanding what matters most to patients and families — without this information, no care plan can be developed, and the ends of medicine — helping the patient — cannot be achieved.
Multiple studies demonstrate that palliative care teams relieve pain and other symptoms; greatly reduce debilitating depression and worry; support families; and help prevent the symptom and stress crises that result in ER visits and hospitalizations. Perhaps because it helps patients avoid the risks of hospitals, or because it lessens disease burden, depression and pain; or because it improves quality of life and the sense of control that makes life worth living — in 5 published studies patients who receive palliative care services not only feel a lot better, but also live longer than similar patients who do not.
The website www.getpalliativecare.orgis a good example of clear palliative care information aimed at improving health literacy for patients with all kinds of serious illnesses and their families. It’s written in plain language. Paragraphs and sentences are kept as short and simple as possible. The language used is familiar and without jargon. There are clear action steps helping people to find out how to locate local palliative care services. The site also tries to use an active voice rather than a lot of passive sentences. All of these features help to make the site user-friendly and accessible to the regular people who most need this information and the safety net it promises.
Information is provided in several different formats – written, audio and visual – to ensure that those with limited reading or language skills have equal access. Practical, and easy to understand advice and guidance helps patients and loved ones to clearly communicate their needs to their health providers. Additional information is available for health professionals to ensure communication and information is improved for all.
Although palliative care services have tripled in number in the past 10 years, many patients and families in need never actually receive it.
In part, this can be attributed to the newness of the field — many physicians don’t understand what palliative care is either, and fail to offer it to their patients in spite of what should be obvious misery and distress associated with a serious illness.
Empowered consumers, however, are key.
A patient or a family member armed with accurate information about what palliative care is and how it can help them has real influence and impact on physician behavior. Public awareness will drive public demand. Multiple media platforms — radio, TV, print media, and most important: the web and social media — will help our patients and the families who care for them to get the best care possible.
About the Author:
Diane E. Meier, MD, FACP is the Director of the Center to Advance Palliative Care (CAPC), a national organization devoted to increasing the number and quality of palliative care programs in the United States. Under her leadership the number of palliative care programs in U.S. hospitals has more than tripled in the last 5 years. She is Vice-Chair for Public Policy and Professor of Geriatrics and Palliative Medicine; Catherine Gaisman Professor of Medical Ethics; and was the founder and Director of the Hertzberg Palliative Care Institute, 1997-2011, all at Mount Sinai School of Medicine in New York City.