Showing posts with label caregivers. Show all posts
Showing posts with label caregivers. Show all posts

Thursday, June 9, 2011

A Member of NHPCO’s Leadership Team Shares Thoughts on Death(ly) Panels

I spent Memorial Day Weekend with a group of Cub Scouts ranging in age from six to 11. My son, who is eleven, was excited to be “crossing the bridge” from Cub Scouts to Boy Scouts. The formal ritual, which involved his Den leader saying some nice words about his growth and older Boy Scouts welcoming him to their midst, was an important milestone in my son’s life. He isn’t a little kid any more, he’s a teenager. I have no idea when that happened.



Nor do I know the specific moment when I became the adult caregiver of my mother, who turns 80 this year and has been in good physical and mental shape for years. Yet it hasn’t been easy. The death of her two sisters within six months of one another and two knee replacements surgeries of her own during those difficult months left her exhausted as well as emotionally and physically frail. I flew to Florida to visit her in the facility where she is receiving rehab, arranged for non-medical aides to help her when she moved back home and spent a few days with her so she wouldn’t be alone. This was an important milestone for me as an adult daughter. My responsibility level has increased and there really isn’t any going back.



As adults we experience multiple milestones – planned and unplanned – that mark our progression through life. One day we are happily single and the next we’re in a committed relationship. We’re childless and then become parents in a few short months. We are healthy and the next day we’re told we have a potentially life-limiting illness. It all happens so fast and there’s little we can do to slow down this inevitable march onward, through life’s stages.



We can’t stop it, even though many people try to slow down the aging process through surgery, exercise, nutrition or just plain denial. We can save money for our kids’ education. We can put money away for retirement. But eventually we’re all going to face the fact that we’re all mortal. Even as aware as we all are that we will die some day, we do little to plan for it.



When there is a healthcare crisis, which happens to so many people, we are unprepared, as are our families. We haven’t thought about the type of care we want or don’t want. We haven’t selected someone to speak for us if we can’t talk to the doctors ourselves. We haven’t told anyone whether we would or would not want to be kept alive through medical interventions if the chance of recovery was slim. We haven’t planned properly to make sure we are in control during what might be the last phase of our life.



My son is now memorizing all the Boy Scout pledges, laws and mottos in preparation for his first meeting. To me the most important one, besides “do a good turn every day,” is the one that is best known and yet universally most ignored – “be prepared.”



You can’t avoid the last milestone in life. Hopefully you won’t face it for many years to come. But it will happen, in some shape or form, to all of us. Take a lesson from my son, be prepared. Download a free advance directive, read it through and talk about with your doctor and family members, sign it and give copies to folks who will need it during a crisis. Take control of the phase of your life before that milestone creeps up on you and catches you unprepared.

GUEST BLOGGER: Kathy Brandt, MS, the Senior Vice President, Office of Education and Engagement at the National Hospice and Palliative Care Organization, is a passionate believer in the need to plan for, talk about, and document end-of-life care wishes, and the proud mother of an amazing eleven year Boy Scout.

Wednesday, August 25, 2010

August 2010 ChiPPS Newsletter Released

NHPCO’s Children’s Project on Palliative/Hospice Services has just released the new issue of its newsletter. This issue of the ChiPPS newsletter offers a PDF collection of articles that illustrate the importance of memory making and legacy building in pediatric palliative and hospice care. A message from NHPCO President and CEO J. Donald Schumacher was included – and is shared below.

(Download the PDF collection of articles)

A Message from Don Schumacher

On August 2, I opened NHPCO’s conference, Developing the Care Continuum, with a discussion about the importance of hospice and palliative care in the continuum of care. I wanted to share just a few thoughts with the readers of the ChiPPS newsletter.

I think many people would agree that the US healthcare system is quite fragmented – hence the importance of creating a continuum that includes hospice and palliative care. This must include pediatric palliative care.

Pediatric care has always been near to my heart and as quality-driven providers, we should be able to support the needs and/or assist in care coordination of all those coping serious and life-limiting illness – this includes children, adolescents, and their family members.

I recognize that pediatric palliative care is something many providers feel uncomfortable offering, but it is something we should understand more fully. We must expand our skill set and explore what resources are available to families in the communities we serve. I commend the work of the Children’s Project for Palliative/Hospice Services in developing new tools and resources to move the field forward.

Pediatric palliative care was specifically addressed in the health care reform legislation passed this year. This was a provision that NHPCO strongly lobbied for. The law allows children who are enrolled in either Medicaid or CHIP to receive hospice services without foregoing curative treatment related to a life-limiting illness. This should provide for a more seamless continuum.

When there is a seamless care continuum, providers work together to develop a coordinated plan that addresses all the needs of the patient and family caregivers. Those of you involved in pediatric palliative care know all too well that the needs of these seriously ill young people and families encompass physical, emotional, social, spiritual, nutritional and financial as well as practical and logistical needs. Care and services should be coordinated by professionals who understand the range of options available and appropriate in each situation.

I also want to stress that the concept of the care continuum is not – indeed, cannot be – solely geared to hospice providers. I know there are many hospice professionals working with ChiPPS but there are many others representing a range of provider types and disciplines, and we all must be involved with the development of the care continuum. Working together towards the creation of a seamless continuum will require us to collaborate and partner in a more expansive way than we’ve ever seen in the hospice community.

I believe that every single hospice provider needs to offer non-hospice palliative care. If you do not, somebody else will. Hospices are the experts in serious and life-limiting illness in their communities and they must be leaders in developing a seamless continuum of care.

So what I’m hoping is that hospices in the United States, in addition to the wonderful things they already do providing care in the last months of life, will become more visible and available as providers of or experts in pediatric palliative care.

Thank you for all you do to advance care for young people and their families.

J. Donald Schumacher, PsyD
NHPCO President and CEO

Thursday, June 3, 2010

June 2010 Palliative Care Grand Rounds

The June Palliative Care Grand Rounds, a "monthly blog carnival" highlighting blog post focusing on hospice, palliative care and grief matters, is being hosted this month by Julie Rosen at the Schwartz Center Blog. Check it out today!

The views expressed in the Palliative Care Grand Rounds are the sole responsibility of the authors of each blog highlighted and does not necessarily reflect the views of NHPCO, this blog or its editors.

Tuesday, March 3, 2009

NHPCO Responds to Misleading Associated Press Quote

NHPCO Comments on Misleading Quote in Associated Press Article and Provides Helpful Information
Hospice is about Living Life as Fully as Possible

(Alexandria, Va) – The National Hospice and Palliative Care Organization wants all people to know that hospice delivers the highest quality care and services to patients and family caregivers who are coping with life-limiting illness. A recent article carried by the Associated Press (“Assisted Suicide Presents Legal Quandary,” by Greg Bluestein, 03/02/09) carries a misinformed quote from an attorney who incorrectly compared hospice to suicide. This remark was incorrect and demonstrates a lack of understanding about the hospice philosophy of care.
“Hospice compassionately cares for people who are near the close of life – but hospice isn’t about how you die, it’s about how you live. Hospice and palliative care focuses on how dying persons and their loved ones live each day, providing comfort and guidance along the way,” said J. Donald Schumacher, president and CEO of National Hospice and Palliative Care Organization. “The quote from that news article demonstrates a callous disregard for all those who receive care, including family caregivers, from our nation’s hospice programs.”
Hospice is widely recognized as the model for quality, compassionate care for people facing a life-limiting illness or injury. Hospice and palliative care involve a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the person’s needs and wishes. Support is provided to the person's loved ones as well.
“A common misconception people have is that hospice means you’re ‘giving up’ or ‘that there’s nothing left for the doctor to do,’ and that’s absolutely wrong. Hospice is not about giving up but is about maximizing the quality of life, no matter how long that might be,” Schumacher said.
When cure is no longer possible, hospice provides the type of care most people say they want at the end of life – comfort and quality of life. The most common statement made by families who chose hospice for their loved one is, “we wish we had known about hospice sooner.”
  • Hospice focuses on caring, not curing and, in most cases, care is provided in the person’s home.
  • Hospice care also is provided in freestanding hospice centers, hospitals, and nursing homes and other long-term care facilities.
  • Hospice services are available to patients of any age, religion, race, or illness.
  • Hospice provides bereavement support to families for 12 months following the death of their loved one.
  • Hospice care is covered under Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations
  • Research has shown the Medicare beneficiaries that opted for hospice care as opposed to other medical interventions when faced with a terminal illness lived on average 29 days longer than those who did not receive hospice care.

Foundational values of NHPCO include universal access to high quality hospice and palliative care, fully informed decision-making, mitigation of unwanted suffering, non-abandonment and support for the bereaved. NHPCO would encourage all those struggling with serious and life-limiting illness to fully explore hospice and palliative care services before they find themselves in a crisis situation involving options for care of a dying loved one. To learn more about hospice and palliative care, dealing with pain, and advance care planning, visit NHPCO’s Caring Connections at http://www.caringinfo.org/oror call 1-800-658-8898.

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Note: NHPCO’s position statement and narrative on physician assisted suicide is available via the Communications section of NHPCO’s Web site.

Media Contact: Jon Radulovic

NHPCO, Vice President of Communications

703-837-3139

jradulovic@nhpco.org


For more information visit, http://www.nhpco.org