An advance directive is your voice


CURE invited Kathy Brandt, of the National Hospice and Palliative Care Organization, to share her thoughts on the importance of advance care planning.I've never seen a death panel. Although what comes to mind when I try to visual one is the court that Harry Potter faces when he's accused of under-age wizardry. Harry faces death eaters waiting to enforce the punishment; scary looking people from the Ministry of Magic impassionate to the specific situation; people begging to be heard as individuals. That is some scary stuff. Fortunately, it's all fiction. Both the Ministry of Magic that Harry Potter faces and the Death Panels that many Americans were frightened into believing actually exist -- fiction.I am a huge proponent of advance care planning, which somehow became strangely aligned with this fanciful concept of government representatives callously deciding who gets to live or die. As someone who has worked in hospice for twenty-plus years I can assure you that there are no death panels.And yet, somehow our public conversation about advance care planning – a process which empowers people to think about and make decisions about their choices for healthcare in a crisis situation – became about government overlords relegating granny to a medical death squad.For people living with cancer or other illnesses, this public discourse is cruel and dangerous. In a few short weeks a powerful tool for patient empowerment was forever tarnished in the name of political gamesmanship. My hope is that you – that all of us – can reclaim advance care planning for what it was intended to be: A mechanism to allow people to hold on to one thing that is slowly slipping away from them – control. Advance care planning allows you to decide:

• What types of treatments you want or don't should you become unable to communicate your wishes – and whether you want the treatments given to you indefinitely or for a while until hope for recovery is less likely

• Who can speak for you in the event you can no longer talk to your doctors about your care – ensuring that your doctors include the people you want included in care discussions

• How to let your family members and friends know about choices. Don't want to talk about it – hand them your advance directive and let them read it on their own

• When you want doctors to begin the conversation about hospice or palliative care – research shows that physicians often wait too long to talk about hospice care. If you want hospice for you and your family - write it in your living will and make sure your doctor understands your wishesAn advance directive is your voice. It speaks for you when you can't speak for yourself. The closest thing to a death panel that I have ever seen would be family members huddled in the waiting room of a hospital struggling over which treatments they should choose for their loved one who can't tell them what he or she would want. That's a heartbreaking situation played out in hospitals across the country, every day. That's the only death panel that could end up deciding your fate – perhaps even arguing and fighting about it – if you don't take back control and make decisions yourself. Make your voice heard about the care and treatment you would want. Complete your advance directives – a living will and health care power of attorney – and share it with your family and healthcare providers before it's too late.Kathy Brandt, MS, the Senior Vice President, Office of Education and Engagement at the National Hospice and Palliative Care Organization, is an advocate for advance care planning and a huge Harry Potter fan experiencing anticipatory grief in advance of the final Harry Potter movie this summer.

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