Showing posts with label death. Show all posts
Showing posts with label death. 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, January 5, 2011

Hospice Community Disappointed in Administration’s Decision and Reminds All Americans of the Value of Advance Care Planning

(Alexandria, Va) – “We are surprised that the Administration has decided to reverse the decision to include voluntary advance care planning consultations as part of a Medicare beneficiaries’ annual wellness exam,” remarked J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization.

Despite this action, NHPCO strongly encourages all Americans to think about their wishes for care at the end of life and engage in advance care planning. This includes having discussions with healthcare providers and family members, completing an advance directive (which includes a living will and healthcare proxy), and making sure their loved ones understand their wishes.

“Frankly, we are somewhat disappointed that the regulatory guideline making this part of the annual Medicare exam and compensating the physician for taking time to talk about personal preferences has become such a political issue,” continued Schumacher. “It's simply about educating patients about the types of decisions they might need to consider in future healthcare situations, and then supporting them as they make their own choices based on their values, beliefs and preferences.”

The opportunity for this voluntary consultation with a physician has been part of the “welcome to Medicare” exam since 2008.

Research has shown that patients who discuss their care options when facing a serious or life-limiting illness report a higher quality of life, less hospitalizations and fewer visits to the emergency department. Family caregivers have also been shown to benefit from discussions held between physicians and patients.

Far too often, patients and their families are forced to make decisions in times of crisis; these voluntary advance care planning consultations would have facilitated informed conversations prior to the onset of an illness or medical crisis.

“Death and dying can be a difficult topic for people to deal with – this includes politicians crafting legislation, healthcare providers caring for patients, and people who may be confronting a serious illness. But as hard as this can be, it’s far more difficult for a patient and family to face a medical crisis without a prior understanding of an individual’s wishes and how quality of life might be addressed. Knowing a loved one has engaged in discussions with a knowledgeable physician can bring comfort to patients and families—and that can be quite a gift at a challenging time,” Schumacher said. “Having this option spelled out in Medicare regulations would have raised awareness of advance care planning and potentially opened the door for valuable conversations.”

NHPCO emphasizes that advance care planning is not about discontinuing treatment, saving money, or having someone else make decisions for you; it’s about making sure your wishes are known and then honored, regardless of whether you choose every medical intervention available, discontinue non-productive treatments, or something in between.

There is concern among hospice providers that the debate about this regulation and last year’s “death panel” rumors will cause additional confusion to members of the public and make them even more suspicious of advance care planning.

Hospice and palliative care providers are skilled in helping people understand issues of importance when facing a serious or life-limiting illness and can be important resources for those looking to learn more or make their wishes known.

NHPCO’s Caring Connections offers information on care at the end of life and provides free, state-specific living will and healthcare proxy forms: Visit www.caringinfo.org or call the HelpLine at 1-800-658-8898.

Tuesday, November 23, 2010

Don't Wait to Talk About Hospice

With Release of PBS FrontlineSeries and Dartmouth Atlas Report, NHPCO Reminds People of the Importance of Advance Care Planning

(Alexandria, Va) – An intimate journey into the edge of life is how this evening’s episode of the PBS series Frontline has been described. Frontline’s "Facing Death" will air this evening (11/23/10) at 9:00pm on most PBS stations.

In this groundbreaking film, doctors, patients and families at one of New York’s biggest hospitals speak with remarkable candor about the increasingly difficult choices people are making at the end of life: when to remove a breathing tube in the ICU; when to continue treatment for patients with aggressive blood cancers; when to perform a surgery; and when to call for hospice.

This follows the release of a report from the Dartmouth Atlas Project looking at care for patients with advanced cancer at the end of life that identified gaps between patient wishes and care received.

The National Hospice and Palliative Care Organization urges members of the public to learn about advance care planning and discuss wishes with family members.

“It’s an all too common situation. A family is at the bedside of a loved one who is seriously ill and nearing the end of life,” remarked J. Donald Schumacher, NHPCO president and CEO. “Each member of the family has a different idea of what should be done and what the patient would have wanted.”

Far too many people wait until they are in the midst of a health care crisis before thinking about what options are available or what care they or their loved ones would have wanted. Hospice professionals deal with these challenging situations every day – that’s what they are trained to do.

When a family is coping with a serious illness and a cure is no longer possible, hospice provides the type of care most people say they want at the end of life: comfort and dignity. Considered to be the model for high-quality, compassionate care for people with a life-limiting illness, hospice care includes expert medical care, pain management, and emotional and spiritual support. Care is provided by an inter-disciplinary team of professionals and trained volunteers. The wishes of the patient and family are always at the center of care.

Most hospice care is provided in the home – where the majority of Americans have said they would want to be at this time. Care is also provided in nursing homes, assisted living facilities, and hospice centers.

Care is paid for by Medicare, Medicaid, and most private insurance plans and HMOs.

The National Hospice and Palliative Care Organization reports that more than 1.56 million people received care from our nation’s hospices last year.

Hospice providers can help with information about care options and choices and ensure you live as fully as possible throughout your entire life. They will make sure your loved ones receive support as well.

One of the best ways to make sure you and your loved ones benefit fully from hospice, should you ever need this care, is to talk about it before it becomes an issue.

For more information on advance care planning and hospice, visit NHPCO’s Caring Connections at caringinfo.org or call the HelpLine at 1-800-658-8898.

Caring Connections is one of the recommended resources included with the education tools PBS has made available online for “Facing Death.”

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Contact:
Jon Radulovic
NHPCO, Vice President of Communications
Ph: 703-837-3139
jradulovic@nhpco.org

Friday, March 12, 2010

What Are Living Wills? NHPCO offers free advance care planning resources

(Alexandria, Va) – Over the past weeks, Keith Olbermann has shared his personal experience regarding his father’s health crisis on his MSNBC program “Countdown.” On yesterday’s broadcast (03/11/10) Olbermann spoke about the necessity of loved ones talking about the care they would want and completing a living will and appointing a health care proxy.

“Talking with families about health care wishes and completing living wills while you are healthy is about living fully,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization. “Planning ahead and understanding the choices you and your loved ones might have to decide during a medical crisis has nothing to do with the infamous ‘death panels’ that have caused such confusion and distraction about an issue important to every single one of us.”

NHPCO’s Caring Connections initiative offers a range of materials and information free of charge—including state specific advance directive forms—at
caringinfo.org/planningahead.

Planning ahead is about preparing for the future today. Communicating your end-of-life wishes to your loved ones, appointing a health care power of attorney, and addressing financial issues such as wills and paying for long-term care are just a few of the issues you can address today to plan ahead.

What are Advance Directives?

An advance directive—often called a living will—allows you to document your wishes concerning medical treatments and care when facing a medical crisis or at the end of life.

A medical power of attorney—also known as a health care proxy—is part of advance care planning. This allows you to appoint a person you trust as your health care agent (or surrogate decision maker), who is authorized to make medical decisions on your behalf. Before a medical power of attorney goes into effect a person’s physician must conclude that they are unable to make their own medical decisions.

Advance directives are legally valid throughout the United States. It is important to complete and sign advance directives that comply with your state's law. However, you do not need a lawyer to complete and execute a living will or health care power of attorney. Each Caring Connections, state-specific advance care planning packet comes with complete step-by-step instructions. The documents are free of charge.

Visit
caringinfo.org to learn more about planning for the unthinkable before a crisis. Information is also available from the HelpLine at 1-800-658-8898. Providers are encouraged to share these resources with their community.

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Caring Connections offers resources to help providers reach out and educate communities about advance care planning. Here are some of the resources that can be found on the Caring


Connections website:
·
How to Talk with Your Loved Ones
· What to do if Family Members Disagree
· How to Talk with Your Healthcare Providers
· Talking with Others about Their End-of-Life Wishes
· Are You Traveling Without a Map? A Layperson’s Guide to Advance Care Planning
· Advance Care Planning Awareness Ribbon

Contact:

Kathy Brandt
Vice President, Innovation and Access
Ph: 703-837-3125

Jon Radulovic
NHPCO Vice President, Communications
Ph: 703-837-3139