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Strong support is an essential part of life, especially when you’re facing a serious and life-altering illness. For those living with advanced cancer, HIV/AIDS, amyotrophic lateral sclerosis (ALS), heart disease, kidney disease, lung disease, or dementia, palliative care offers the necessary support.
Palliative care consists of a team of professionals who work to minimize the challenges and discomforts of a serious disease. Unlike hospice care, it can be used at any point in the progression of a disease. Palliative care may include pain management, curative treatments, massage therapy, spiritual and social counseling, and other medical care.
Those who receive palliative care have unique needs and stressors. A personalized team can understand and address these needs. In addition, support from friends and family is key during these stages. The following online resources help to inform and support those who are considering palliative care or going through it, as well as their loved ones.
Get Palliative Care is a thoughtfully presented resource for those who want to learn about the basics of palliative care and how to make the most of it. You’ll find information and insights from licensed professionals, presented by the Center to Advance Palliative Care. All the authors on the blog are medical professionals, and many are doctors. But what really sets this blog apart is its use of both articles and video to tell personal stories. It approaches the world of palliative care from a practical and a human angle. There are podcasts, handouts for families of those receiving care, and even a provider directory.
GeriPal focuses on palliative care for older individuals. This blog keeps in mind the special needs of geriatric patients — and their providers. It aims to be an open forum for the exchange of ideas and an online community for providers focused on geriatric palliative care. You’ll find interviews with medical professionals, information on the latest research, and podcasts on a variety of issues. GeriPal’s library of articles covers topics ranging from dying without dialysis to palliative care in rural America.
If you’re new to the world of palliative care, this site will answer just about every question you may have. It addresses what palliative care is, who comprises a team, how to get started, questions to ask your doctor, and how to develop a care plan that works for you. Palliative Doctors focuses on creating the best possible experience for individuals undergoing care. One of the highlights is the section featuring patient stories, where you can read about people’s touching real-life experiences.
Since 2009, Dying Matters has sought to bring the conversation about death to the forefront. This is done in an effort to help patients plan, in their own way, for the end of life. Because palliative care is often used by those making end-of-life decisions, this is a valuable resource that can make those decisions and the conversations surrounding them a bit easier. The site aims to inform as well as to raise awareness. It offers everything from short films in which actors portray different scenarios, to lighter fare like 10 Myth-Busting Funeral Facts.
Pallimed is an all-volunteer effort written primarily by doctors. The blog focuses on the latest in palliative care research, but behind it is a sincere respect and passion for the subject matter. Interested in far more than just science, the authors discuss topics like compassion, grief, spirituality, and physician-assisted dying. The sheer variety of topics covered, along with the authoritative voices behind them, make this a go-to resource.
Palliative in Practice offers news, information on funding and policy, personal stories, and insights from medical professionals. Information is aimed at representing the full range of palliative care. Produced by the Center to Advance Palliative Care, the site speaks with an authoritative voice. It encourages the support, availability, and understanding of palliative services.
The American Academy of Hospice and Palliative Medicine (AAHPM) is an organization of medical professionals involved in the field of palliative care. Not surprisingly, the blog is primarily geared toward this audience. It features news, research, conferences, academic studies, educational materials, and other information. Despite being largely written for doctors, patients and their support systems can find some gems here, including this interview with the intensive care doctor (and AAHPM member) who starred in a Netflix original documentary about end of life.
Crossroads is dedicated to providing information and advice to people receiving both hospice and palliative care. Hospice and palliative care are often done together, but they aren’t the same thing. This site offers articles about professionals in both fields, profiles of the people receiving care, and detailed information on the conditions patients may be living with. Life journals (for those nearing end of life), a special section for veterans, and care-based articles like What It Takes to Be a Hospice Social Worker make this a rich and multifaceted site.
Based at the University of Texas, the MD Anderson Cancer Center is committed to creating a healthier world. Their goal is to “eliminate cancer in Texas, the nation, and the world.” To that end, the MD Anderson site focuses on patient care, research and prevention, education, and awareness. Their interdisciplinary team includes physicians who specialize in “supportive care and rehabilitation medicine.” The team also includes nurses, psychiatrists, social workers, dieticians, therapists, pharmacists, and more. The goal is “strengthening, relieving, and comforting” patients and their families. In the world of palliative care, that’s what it’s all about.