Tag: advocate for palliative care

For many years, Beth, 55, of Baltimore couldn’t shake the nickname her sister and friends gave her.

“They called me Balloon Hand Beth because whenever someone needed something, my hand would float up to volunteer,” says Beth.

Beth has always been very active and willing to pitch in. In her professional life, she has worked tirelessly to improve her city’s environment one planted tree at a time as the Director of the Office of Sustainability in Baltimore. Most days, if she’s not helping out a relative or preparing to host a family holiday party, she can be found in her garden, meticulously growing her own food.      … Read More

Matt is about to start another abstract painting. With classic rock music blasting in the background, he holds the brush between his lips, steadies his neck and presses the brush against the canvas.

A few months ago, Matt, 38, wouldn’t have believed you if you told him he’d be painting again. Fourteen years ago, a severe car accident left him paralyzed from the upper chest down. While his diaphragm wasn’t paralyzed in the accident, it was weakened significantly, which has caused Matt to have breathing problems that have grown progressively worse over time. Those issues coupled with severe nerve pain and the emotional stress of dealing with the traumatic events of the accident have been a daily struggle.

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When we go into the hospital, we want to be treated for whatever is ailing us. We also expect to be heard and validated.

When Toby Palma, a Las Vegas, Nevada woman in her early 40s, went into the emergency room several times complaining of severe pain all over her body, the doctors kept telling her it was a minor kidney infection. … Read More

Today, advocates from the Patient Quality of Life Coalition will descend on Capitol Hill to educate lawmakers and ask for their support on the Palliative Care and Hospice Education and Training Act (PCHETA) (H.R. 3119/S. 2748).

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Today, April 27, 2016, the Patient Quality of Life Coalition is hosting its very first Virtual Lobby Day. The goal of #PQLCLobbyDay, is to raise the visibility of the Palliative Care and Hospice Education and Training Act (PCHETA) in Congress and generate excitement among its supporters.

PCHETA, also known as H.R. 3119 in the House, and S. 2748 in the Senate, would make necessary policy changes to expand access to palliative care for patients with serious illness. These changes include directing funds to educate the public and providers about palliative care; expanding the federal research investment in palliative care; and expanding workforce training and development opportunities to increase the number of doctors, nurses, social workers and other health professionals trained in palliative care. … Read More