For most Americans, the winter holidays conjure images of gathering with family and friends, lights, snow, sleigh bells and festivity. The holidays can also be an opportune time to explore and communicate your wishes regarding your medical care to your family and close friends, in order to be sure you have control over the kinds of treatment you receive.
Consider these statistics:
-Over 90% of people think it is important to talk to their loved ones about their wishes for end of life care, though fewer than 30% have discussed what they want, according to a survey by the Conversation Project.
-According to the California Healthcare Foundation, 60% of people feel it is ‘extremely important’ to not burden their family by having to make tough decisions about the care they receive, though only 56% of people have communicated their desires with their family members.
-82% of people think it is important to put their wishes in writing, though only 23% have done so.
-70-90% of Americans say they want to die in their home, though in reality 70% of us die in hospitals, nursing facilities or long-term care facilities.
We all need to make our wishes known, which can be done in several ways.
•Advance directives, which include living wills and medical powers of attorney, are legal documents in which a person specifies their wishes for end-of-life care. Advance directives should be done by all adults over the age of 18, and ideally should be completed when one is healthy.
•Living wills are legal documents which can be completed at home and indicate what kind of medical care you would want to receive in the event you cannot speak for yourself. Living wills address use of life-sustaining technology, such as breathing machines (ventilators) and dialysis machines, “Do not resuscitate orders” (DNR) or instructions about CPR (cardiopulmonary resuscitation) in the event you are not breathing and your heart stops, artificial hydration and nutrition (tube feeding), withholding food and fluids and organ and tissue donation.
It is important to appoint a legal health care representative who will be your voice in the event you cannot speak for yourself. This is called a medical power of attorney, or health care proxy. This person should be someone you trust, who knows your wishes, and will be authorized to make medical decisions on your behalf. Your proxy would only be called on if you are unable to make your own decisions. Should you regain the ability to make decisions for yourself, your proxy cannot continue to act on your behalf.
It is important to understand that your proxy’s duty is not to have to make decisions for you, but instead to be your voice and direct care according to what you would want.
Again, it is best to complete advance directives before you’re faced with a serious injury or illness. This will spare your loved ones the stress of making decisions about your care for you while you are sick. Each state has different forms, though many are recognized across state lines.
Advance directives for your state can be downloaded from Caring Connections, a program through the National Hospice and Palliative Care Organization, at www.caringinfo.org.
A POLST form (Physician Orders for Life-Sustaining Treatment) is a medical order that indicates a patient’s wishes regarding treatments used in medical crises. In Oregon, this is a bright pink form which people are instructed to hang on their refrigerator or back of their front door, so if emergency personnel are summoned, it can be easily found.
Contrary to advance directives, the POLST form is intended for individuals diagnosed with a serious illness or frailty, or for people that their healthcare providers would not be surprised if they died within one year. It complements advance directives, and gives people more control over the kinds of therapy they receive.
The POLST form provides orders for current treatments, unlike advance directives which guide future care. The POLST serves as a guide for emergency medical personnel who respond to a crisis. Unlike advance directives, the POLST form is completed with your healthcare provider.
As people prepare their advance directives, they should talk about their decisions with family members and loved ones, and explain the reasons behind their choices. Although having this conversation may not be easy, it’s important for everyone to know what kind of care you want. Of course your wishes may change over time, and these forms can all be updated as often as desired. There are many tools available to help with these discussions. One is called ‘The Conversation Project’, which is a campaign in collaboration with the Institute for Healthcare Improvement, and aims to be sure people’s wishes regarding end-of-life care are expressed and followed.
Their website, theconversationproject.org, contains a starter kit to help you organize your thoughts, and guides you on ways to have the discussion with those close to you.
Other resources include Compassion and Choices www.compassionandchoices.org/what-we-do/advance-planning or Caring Connections
www.caringinfo.org/i4a/pages/index.cfm?pageid=3277.
To learn how we can help with these conversations, visit Partners In Care’s website at partners-bend.org or call us at 541-382-5882.
Jennifer Blechman, MD is a hospice and palliative care physician working at Partners in Care, Central Oregon’s only independent, non-hospital based hospice and home health organization.
