Talking about palliative care can be a difficult and confusing conversation to have but is one that could help many Mainers. Palliative care can help people suffering from many different diseases to have an increased quality of life because it addresses important aspects of care, including physical, emotional, social and spiritual needs. Unfortunately, for many families, discussing palliative care feels like giving up when in reality adding this extra level of care can be beneficial for the patient and his or her family.
Regrettably, there is a common misconception that palliative care and hospice care are synonymous. This is not the case. Hospice care is a form of palliative care, explaining the origin of this misconception. Hospice care, however, focuses on supporting people during their last months of life, whereas palliative care can be provided at any point during a serious illness or injury. This misconception makes people feel that accepting palliative care would mean stopping potential curative treatments when in reality both can be administered simultaneously if the disease is not terminal.
Conversations about palliative care are especially important for Mainers, as the state faces high rates of many chronic conditions and diseases. Maine’s cancer rate is higher than the national average, with the 12 th highest rate of cancer per capita in the country. Also, 37,000 people in Maine have been diagnosed with some form of dementia, a number that is expected to swell to 53,000 by 2020 as our state continues to age. Further, heart disease is the second leading cause of death in Maine, affecting one in four Mainers.
Palliative care has been proven to be an effective treatment for each of these diseases that commonly affect Mainers, as well as many more diseases. A clinical study published in the New England Journal of Medicine in 2010 showed how palliative care increased quality of life and mood and led to less required treatment at the end of life and longer lifespans compared with standard care alone. Further research has substantiated these claims of increased quality and length of life, as well as concluding that palliative care decreases health care costs. This is all good news for Mainers experiencing chronic illnesses or injuries.
The bad news, however, is that the American Cancer Society’s Cancer Action Network gave Maine a “C” grade in providing palliative care for its residents. This means that life-extending, cost-saving comprehensive care is not being provided in an effective way in Maine. This, along with the many barriers to palliative care that currently exist, including lack of understanding and education about the topic, means Mainers are not getting the care they need and deserve.
Luckily, state lawmakers have recognized the importance of palliative care in Maine, with Sen. Brian Langley of Hancock proposing a bill, LD 782, “An Act to Improve the Quality of Life of Persons with Serious Illnesses.” If passed, this bill will lead to the creation of a task force that will work with the Maine Center for Disease Control in establishing, maintaining, operating, evaluating and improving the palliative care offered in Maine. Similar task forces have been effective in improving palliative care offered in other states, including West Virginia, where pain was shown to be better controlled, hospitals providing palliative care increased and families became more included in patient care.
Our state policymakers have started the conversation that will help to improve and increase palliative care programs across the state. Now it’s time for you and your family members suffering from serious illness or injury to start the conversation. Talk to your legislator and make sure the bill passes, and talk to those you know experiencing serious illness or injury encouraging them to explore their options. Consider palliative care at any stage of disease or injury for inclusive care and increased quality of life.
Carmen Linden of Old Town is a graduate student in the School of Social Work at the University of Maine. Linden earned an undergraduate degree in sociology and anthropology from UMaine in 2009.