Tag Archives: palliative care

The care they need – the care they want

video_THUMB-16x9-iCare_4

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. 

GOCCNJ-logo-01

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.

 

 

 

 

Advertisements

At minute 4: end-of-life decisions

Barile at hospitalWHYY’s Newsworks Tonight aired a segment tonight (April 14, 2016) that featured Dr. David Barile’s NJ Goals of Care,.the nonprofit that aims to match patient goals with available therapies by using the NJ POLST (Practitioner Orders for Life Sustaining Treatments) form. Health reporter Elana Gordon also interviewed me re how a caregiver deals with end-of-life decisions. Ten years ago, without good medical guidance, I made end-of-life decisions for a loved one that still keep me awake at night. Two years ago, as a caregiver for a relative in Princeton, I had the benefit of an excellent palliative consult and the POLST process, and I could be completely comfortable with the decisions.

I’m not used to being on the “other end” of an interview, but Gordon expertly elicited an appropriate soundbite.  elana gordon

Here is the podcast link where Barile’s segment is minutes 4 to 6. And here is my first-person story “Evangelist for Palliative Care: Listen First, Then Prescribe,” based on my caregiving experience in 2014,  for U.S. 1 Newspaper.

This Saturday, April 16, is National Healthcare Decisions Day. Much is made of the need for Advanced Directives, and the Princeton Senior Resource  Center offers some excellent tools for making those decisions. But we make Advanced Directives decisions years away from when we are actually sick. If the patient can’t make the decisions, then the Advanced Directives offer useful guidelines.

In contrast, the POLST form deals with particulars — the patient’s current symptoms, current goals, up to date prognosis and available treatments. It offers a framework for extended discussion with a medical professional who can clearly lay out the alternatives.

Please try to take a look at the video series on NJ Goals of Care. Here’s hoping you won’t need them soon. But for later — you will know how to help a loved one get access to good information and make thoughtful decisions, decisions that bring the blessing of peace of mind.

 

Listen, Then Prescribe.

Barile at hospital

Dr. David Barile’s aim is sky high — to effect a culture change in medical decision making. He speaks on Wednesday, April 15, at 7:30 p.m. at the Nassau Club, for the Princeton Regional Chamber. Barile, a foremost expert in palliative care, has a mobile platform, Goals of Care, to help align what patients need with what doctors prescribe. The platform is powered by a Princeton start-up, V  Read about it here. Sign up for the breakfast here — or just come. Networking at 7:30, breakfast at 8.

Chaplains on the Medical Team

 

2015 jan tn04xxtedtaylor_2mm-(ZF-2175-91045-1-001)

For most of us the bookends of our lives – birth and death – take place with the support of a medical team outside the home. Chaplain Tedford J. Taylor, director of pastoral care & training at RWJ University Hospital Hamilton, will speak at a breakfast on Sunday, January 11, on how chaplains and others can offer pastoral companionship and support during these critical times.

The delicious hot breakfast, served by the United Methodist Men at Princeton United Methodist Church,  begins at 8 AM, followed by the program at 8:30.  A $5 donation for the meal is requested. Everyone is welcome!