Monday, April 26, 2010
When I think about this subject and obviously I think about it a lot. I equate it with it is every ones job but no one knows how to do it.
In nursing school it is brushed upon. In medical school it is not talked about. In Law school they often have internships on it? But as much as I feel my attorney colleagues have their place I don't feel explaining medical procedures should be done by someone who is not medical.
So Who Should be discussing Advance Directives?
The Attorney: Often attorneys draft health care proxies and living wills along with a Last Will and Testament. These health care proxies and living wills often get locked in the safe with the Last Will and Testament and don't get looked at again. I have heard rumor of 30 page documents in legal terminology. In speaking with one attorney who is sympathetic to my cause he mentions as the only legal document that an attorney drafts and unleashes on the general population.
The Doctor: Recently laws have been enacted to assist physicians in having these conversations. Health care costs are increasing, overhead is increasing. This is not often on the physician's radar as a high priority. Many times these discussions happen with family members of the patient not the patient in an emergent time.
The U.S. Agency for Healthcare Research and Quality (www.ahrq.gov), in a 2003 article, “Advance Care Planning: Preferences for Care at the End of Life,” found:
* Only 12 percent of the patients with an advance directive received input from the physician in the development
* Between 65 and 75 percent of physicians whose patients had advance directives were not aware they existed.
The physician is suppose to follow this but doesn't even know the patient has this document in place and the physician did not have any input on it.
The Nurse: This group of health care professionals are an ideal group to assist the community in making educated health care decisions. Nurses are educators and advocates,
More Americans Discussing – and Planning – End-of-Life Treatment. The Pew Research Center, January 2006. http://people-press.org/reports/pdf/266.pdf.
*42% of Americans have had a friend or relative suffer from a terminal illness or coma in the last five years and for a majority of these people and 23% of the general public, the issue of withholding life sustaining treatment came up.
*One of the most striking changes between 1990 and 2005 is the growth in the number of people who say they have a living will – up 17 points, from 12% in 1990 to 29% now
29% is not enough.
I have read other reports that say the percentage of advance directives has increased.
It does not matter how much the research says that advance directives have increased. The problem is if your loved one has not discussed these issues and you are charged with making their wishes known to the health care practitioners that are charged with caring for someone you love.
How can you make these complicated health care decisions if you don't know what your loved ones would want?
Sunday, April 25, 2010
The other night I was at a friends 40th birthday party and I was discussing my new business with some friends.
One of my girlfriends shared with me that her mother is going through the advance directives issues with her grandmother.
My friend explained that her grandmother never wanted to be in the nursing home. She said she does not want to be resuscitated and she did not want any “heroic measures.” She mentioned to me that the nursing home called her mother about administering intravenous antibiotics and her mother was not sure what to do.
When I speak with my clients I go over just this.
The perception of heroic Measures run the gambit. Some think of them as only medication to facilitate blood pressure and cardiopulmonary resuscitation. Others think about heroic measures including artificial respiration, artificial nutrition and hydration, intravenous medication, antibiotics. Their is no hard fast rule to this as of yet.
Ultimately it depends on what you believe and your goals of care. You, being the patient if you are able to make these decisions for yourself or you as the person charged with making these decisions for another (you, being the surrogate).
I suggest asking the following questions when speaking with anyone from a facility requesting consent for a procedure of any kind.
I. Find out the name, the title, how long has this person been working with your loved one?
a. Who you are talking to is important.
b. The explanation will be different based on their level of education and if they are just a consultant on the case.
c. If need be request to speak with the physician or the charge nurse if a satisfactory explanation was not given.
II. Ask, what do you expect to accomplish with this measure (ie.Antibiotics, hospitalization, Medications)?
a. Restore present state of health or provide comfort.
1. This will allow you to decide if this is inline with your family member's personal goals?
III. What are the overall goals of care?
a. Sometimes the treatment that they are seeking to administer may not be in line with the overall goals of care.
b. Asking this question assists everyone in clarifying the overall goal
IV. Summarize and repeat what this person has said to you.
a. Perception is everything.
b. Paraphrasing and reviewing ensures you received the information the sender was intending to deliver.
V. Ask yourself are these in line with the goals that your loved one has shared with you or what you think she/he would want if she/he was able to make this decision right now with the facts you have in front of you based on his/her present state of health?
a. Make the decision a factual decision not an emotional decision.
b. It is a decision you are making based on the wishes of another.
Don’t perpetuate this situation. This process causes emotional stress and guilt that lasts a life time.
Make your wishes known to your family and loved ones and memorialize it in a Health Care Proxy Form.
Advance Directives, who wants to think about them?
In my fifteen years of nursing, I can’t tell you how many times I heard the words from a teary-eyed wife or sister, son, husband or brother.
"Gee we never discussed that."
What do you say to someone who is guilt ridden? Someone who never discussed their health care wishes with his or her loved one and now the surrogates don’t know what the right answer is.
The right answer is to make your health care wishes known. Learn from the people you care about. Make your wishes known, now while you have the ability to share these wishes with friends and family.
Identify a health care agent. One person who you trust with your life to make medical decisions for you in the event you are not able to make them for yourself. A person who will; above all do what you want them to do, because it is your wish.
Appoint a second in command. An alternative health care agent. In the event that the health care agent is unable to or unwilling to make medical decisions for you the alternative agent will step in.
Don’t just sign on the dotted line.
You need to let your loved ones know your wishes.
Give your health care agent and your alternative agent copies of your health care proxy form. Give a copy to your doctor. Give a copy to the hospital anytime you go to the hospital. If you go back to the same hospital they may have a copy of it on file BUT assume they don't in an emergency it is best to have a little packet of important papers to grab and go with.
Have a thoughtful discussion about this. Have this discussion with your health care provider and get the facts about measures that you may undergo if you were critically ill. Understand the ramifications of your choices. Sometimes health care providers are not ready to have this conversation with you.
Health care providers are human. We have feelings too. We don't want to lose you as much as you don't want to go. Sometimes we are uncomfortable speaking about these measures as well. If you find your health care provider is uncomfortable with this subject you can ask your health care provider who they would recommend to speak with you about this. Don't let them dismiss the issue.
Everyone over 18 should have a heath care proxy.
My name is Fern Wasserman.
I am a nurse and I assist people in facilitating these conversations.
If you would prefer a self service approach their are many books that may assist you. The one I feel gives a great explanation is by Hank Dunn: Hard Choices for Loving People.
Life is uncertain.
You can give your family and loved ones the greatest gift.
Sharing your wishes and directing your health care in the event you are unable to make decisions is the gift that keeps on giving.
Allow the people you love to go to sleep assured that they honored your wishes.
Saturday, April 3, 2010
This is not solely an end of life issue. One may be under anesthesia and lack decision making capacity.
Anyone over 18 can be a health care agent. Not everyone should be though.
Advance Directives are memorialized in a health care proxy form.
For state specific documents please see http://www.caringinfo.org/stateaddownload
The information on the health care proxy document can be changed at anytime.
In New York we have an excellent resource for completing your advance directives. http://doyourproxy.org/