Tag Archives: healthcare

The care they need – the care they want

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If any part of health care in New Jersey needs reform, it’s end-of-life healthcare. Patients here are likely to undergo more intensive medical care, in their final days, than in any other state. All this treatment rarely helps the patients; likely it just makes them uncomfortable.

David Barile MD, palliative care specialist, founded NJ GoalsofCare,  a non-profit, to help everyone — lay people and medical people — achieve their goals for this stage of life that is often feared and ignored.  “We’re working to set a new standard by helping healthcare providers, patients, and families make medical decisions that genuinely reflect a person’s wishes,” says Barile. He created educational materials and documents to ensure that patients would receive the care they need and no less, and the care they want and no more.

In our family, we have had examples of too much care, too little care, and just the right amount of care. The “just the right amount,” no coincidence, was supervised by Dr. Barile. 

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Now his small organization has coalesced into The Goals of Care Coalition of New Jersey. Its partners are healthcare providers, government agencies, and community organizations.  Founding members are an impressive list:  NJ Hospital Association, the Medical Society of NJ, the NJ Association of Health Plans, the Health Care Association of NJ, HQSI, the Home Care & Hospice Association of NJ, LeadingAge NJ, the NJ Health Care Quality Institute, the NJ Palliative Care APN Consortium, the VNA Health Group, Samaritan Healthcare & Hospice, the NJ Association of Health Care Social Workers and the NJ Association of Mental Health and Addiction Agencies.

From Robert Wood Johnson Foundation it has a one-year grant, $195,000, to address disparities in access to palliative care for minority populations living in New Jersey. It also landed a $75,000 matching grant, and here’s where I — and maybe you — come in. I’m donating, and I invite you to contribute. You can do it through a Facebook fundraising page or directly through GoalsofCareNJ website. 

Talking about the end-of-life does not come easily! That’s why I believe both the medical people and lay people need the GoalsofCare materials.

Bottom line: When it’s time to say goodbye to someone you love, it’s such a comfort to know that the caregivers are following the patient’s wishes.

 

 

 

 

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Cross your fingers: health news

Today’s healthcare news:

I’ll start with Juliet Eilperin’s coverage of the healthcare bill in the Washington Post, “From hospitals, doctors, and patients, a last gasp of opposition to the Senate health-care bill,” A Daily Princetonian alumna, the Post’s senior national affairs correspondent, she tells of how hospitals have mounted unusual lobbying efforts. ‘While McConnell had been pressing for a vote on the measure before the end of June, the delay gave opponents more time to marshal their arguments and make their case to lawmakers. This final lobbying push represents opponents’ best chance of derailing McConnell’s final drive to passage, which continues to look uncertain.’

Today the CEO of Incyte, Herve Hoppenot, speaks at the Princeton Regional chamber lunch. Look for me in a striped jacket. At age six I ‘worked’ in my parents’ cancer research lab and 70 years later I have a vested interest in new cancer cures.

 

Grinding ideas to powder?

 

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“There are few sectors as resistant to change as government and health care,” says Susannah Fox, CTO of the Department of Health and Human Services. Her interview with Laura Landro is in the Wall Street Journal today. “We count on their stability. But I have seen those two millstones grind a great idea down to powder. I’ve also seen initiatives flourish and grow, nurtured on the strong platform that this agency provides.” 

Here is the interview.

My take: In this election season, the image of government-as-inexorably-slow-millstone actually offers a modicum of comfort.

Disclosure: She is my daughter.

Above: Millstones from Evans Pharmaceutical Laboratories, Fleet Street, Liverpool. Used for grinding drugs from c.1846-1948. Catalyst Science Discovery Centre.

Photo by Mike Peel (www.mikepeel.net)., CC BY-SA 4.0, https://commons.wikimedia.org/w/index.php?curid=42180642

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Anna Quindlen: Humanizing Healthcare

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Anna Quindlen made a speech to healthcare professionals about how doctors should treat patients and their families. Her 83-year-old father had recently died from burns over 40 percent of his body. She praised his caregivers.

As you would imagine, her words are potent. “They put a human face, a series of human faces, on my father’s care.” Her speech is online at HumanizingMedicine.org, and read it now because it will be taken off the web in December.

In her comments on medicine Quindlen talks about journalism. Newspapers used to be faceless dispensers of information, and readers “had their back fences to chew over their tragedies, their disappointments, and their dreams.”  Now newspapers use social media to facilitate those discussions.

She likens the power relationships inherent in medicine with the power that journalists have. When interviewed, you have every good reason to wonder whether I will get your story right — or wrong.  But doctors have power over our very lives.

And so she makes the case for empowered patients, patients and family members who are armed with knowledge, who want to be treated as individuals. “People want the press to see them . . . as a person. They want the doctors and nurses to see them as something more than files. . . We are part of a society that has suddenly discovered that it has no human face and that is terrified and repelled by that fact. ”

I learned of Quindlen’s speech from  another of my favorite writers.