Start the conversation early
There’s an ongoing joke in health care circles that “Scientific studies continue to show that 100% of Americans eventually die.”
And yet, judging by the amount of money spent on medical care in the last 6 months of life, we make every effort to deny that eventuality.
It seems that no matter how much money you use during that last year/month, if the person is sick enough, the effort makes things worse. A lot of the money being spent is not only not helping, it is making that patient endure more bad experiences on a daily basis. The patient’s quality of life is being sacrificed by increasing the cost of death.
I’m a fatalist as well as a nurse, so I talk about end-of-life issues all the time, with everyone. What kind of treatment would I want or not want? How do I envision the “perfect” death? Or at least a comfortable, dignified and purposeful one?
But not everyone is at ease talking about death with their spouses, their children or their parents. Some people can’t even think about their own deaths, let alone a loved one’s.
I get that.
But seriously, not having these conversations and waiting until the inevitable happens—however it happens—can be emotionally paralyzing, leading to unnecessary, potentially harmful and expensive care. Ask any ICU nurse, and they will tell you stories of families ripped apart while trying to make end-of-life decisions when they don’t have guidance from the incapacitated family member. It can be a very ugly and painful situation.
I cared for a woman in her 90s whose family had considered making her a DNR [do not resucitate], but decided against it. After a relatively minor stroke that left her awake but not lucid, Helen* [not her real name] went into kidney failure and started on continuous hemodialysis.
During the next shift, Helen’s heart stopped beating. But despite talking with the doctors about her advanced age and the poor state of her health, her family had nonetheless decided that we should “do everything we can” for her, and so Helen died in a frenzy of nurses pumping her with vasopressors and doing chest compressions, probably cracking several ribs.
Did Helen have a living will or ever discuss with her children what she would want in such a situation? Obviously not.
Get help from Five Wishes
Several years ago I found a great resource for talking about end-of-life issues and making living wills. Aging with Dignity, a non-profit organization, offers an informative, easy-to-use document called Five Wishes.
These five wishes are:
- The person I want to make care decisions for me when I can’t: This is known as the durable power of attorney for health care (DPA). You can appoint any adult to act as your health care proxy and make health care decisions for you when and if you are unable. If you do not appoint a specific person, in most states the decisions will default to 1) the spouse and 2) any adult children.
- The kind of medical treatment I want or don’t want: This section is also known as the living will. The form helps you to select what kinds of treatment you do or don’t want in various situations. Questionable treatments might include CPR, having a machine breathe for you, being fed through a tube, etc. Together, the DPA and the living will are known as advance directives.
- How comfortable I want to be: How much pain medication or sedation would you want? Or personal care, such as shaving, nail care or hair care? Music, poems or prayers? Let your family members/care providers know!
- How I want people to treat me: Would you rather be in a hospital or at home? Do you want people to sit with you, talk to you or read to you even if you do not respond? How about pictures of loved ones nearby?
- What I want my loved ones to know: Here are the messages of love and forgiveness, as well as any special requests for a funeral or memorial service.
The last page is the legal stuff—you need to have two witnesses sign, and in some states (the booklet will tell you) you will need to have it notarized, as well.
Know your state’s legal requirements
Five Wishes is recognized as a legal document in most states. A few states (again, the booklet will tell you which ones) require you to use state-provided forms for DPAs and livings wills. However, you can still use Five Wishes to complement those documents and provide more helpful information to your family.
To find out information regarding DPAs and living wills in your state, use this link to go to your state’s attorney general website.
Try to update your advance directives every two to three years. Besides getting older, your health might change or you may change your mind about who you want as your DPA. The Five Wishes booklet and the Aging with Dignity Website provide instructions about how to update your forms.
Filling out these forms now does not bind you to them if you change your mind later.
I’m relatively young and healthy, so my Five Wishes is pretty generic about what I do and don’t want. If at some time I am diagnosed with a life-limiting illness (as we say in the biz), I may want to change the treatment details to be much more specific.
Five Wishes costs $5/booklet and is available on the Aging with Dignity website. If you buy 25 or more, they are only $1 each, so show your friends and family you care and give Five Wishes as Christmas presents 🙂