Collectively Wise

New Directions in Advance Directives

[by Joanne Reynolds]

Caregiving is a complicated process. And no area of it is more complex than the subject of quality of life choices and advance directives, those documents that patients can use to determine who is going to make decisions about their care when they no longer can, and just what those decision can—and cannot—be.

Last week I was privileged to be part of a conference for caregivers hosted by the Cancer Center at Hoag Memorial Hospital, Presbyterian in Newport Beach, CA. In a terrific program offered through the hospital’s Palliative Care Services, I found out there’s some new material to share with caregivers on the subject of advance directives and what I’d call care management.

At this particular hospital, Palliative Care extends far beyond the limits of keeping dying patients comfortable. It has become what I consider care management. All patients-- every single person who checks into the hospital for in-patient care-- are offered these services. What that means is that the medical team who are treating the patient, the patient’s caregiver and other family members and the Palliative Care team meet to talk about the full spectrum of the patient’s needs. One of the services the team provides is to help the patient and medical team, along with the caregivers, put together a care plan.

Physican's Directives

After caring for two parents with Dementia/Alzheimer's for a total of eleven years, I am full aware of the great importance of having Physician's or Advanced Directives in place, BEFORE something happens. These directives are your wishes should you become unable to speak for yourself. You have the make the choice of how you want to be cared for should you have a heart attack, stroke, accident or Alzheimer's. Some people want it all. They want to be on full life support and leave it up to their loved ones to pull the plug so to speak. Others, like my parents, were more specific with their wishes. They did not want to be put on any kind of life extending machines to help them breath, keep their hearts going and so on. They chose to have minimal means and comfort care only. 

Those papers sat in their lawyers office for a good fifteen years until they were needed but I can't tell you how happy I was that they were there. In very clear terms each parent listed what they wanted done. It was as if my parents were there telling me in their own words "I want this".  These papers also listed me as their executor, basically giving me permission to speak on their behalf. Both my parents were still conscious and not in any kind of accident but as the Alzheimer's slowly ate away at their minds, it was clear that they were no longer able to make any decisions.

Advanced Directives: Let your family know your wishes

Two weeks ago a distant uncle had blood clots from recent back surgery lodge in his heart and cause a massive heart attack. By the time he reached the emergency room, he’d flat lined six times, leaving him comatose and, as it was determined later, with severe brain damage. The hardest part for his wife, daughter, and other family members—he had no Advance Directive.

While I’d heard of a DNR (Do Not Resuscitate) order, an Advance Directive (also called an Advanced Health Care Directive) was a new term to me. In essence, it’s healthcare instructions in the event someone is no longer able to make decisions for him or herself. According to Wikipedia, a living will is the oldest form of directive. Living Wills aren’t recognized in California, though can still offer guidance to medical professionals and loved ones. Some Advance Directives include a medical power of attorney, or health care proxy, to make decisions on your behalf.

For state-specific forms: http://www.caringinfo.org/stateaddownload

In the late 90’s, Aging with Dignity, developed a combination of a living will and a health care power of attorney, called the Five Wishes. Wishes 1 and 2 meet legal requirements in 42 states. Wishes 3 through 5 address more general issues of comfort and spirituality. This is a general description from Wikipedia:

Wish 1: The Person I Want to Make Care Decisions for Me When I Can't
This section is an assignment of a health care agent (also called proxy, surrogate, representative or health care power of attorney). This person makes medical decisions on your behalf if you are unable to speak for yourself.

Wish 2: The Kind of Medical Treatment I Want or Don't Want
This section is a living will—a definition of what life support treatment means to you, and when you would and would not want it.

Wish 3: How Comfortable I Want to Be

Long Term Planning

I’m sharing the Top Three Caregiving Questions that are asked repeatedly at the workshop I’m giving around the country this summer.

Number one on the list is about getting participation in caregiving from the rest of the family. The next most-asked question is about what I call long-term planning.

This falls into two broad categories—finances of the patient and caregiver, and advance directives, or creating a legal document that memorializes how they want their care to be handled in the future when they cannot direct it themselves.

I am not a financial professional, so my first piece of advice is to go find one, preferably one who is knowledgeable in estate planning as it relates to long-term care of someone. This person needs to be knowledgeable across a range of related subjects—estate planning, long-term care strategies, and Medicare and Medicaid laws.

This is a complicated subject and each individual’s case is unique, so don’t just go and adopt the plan that your next-door neighbor’s cousin used because it may not make strategic sense for you loved one and you family.

My dad used to say that spending time with professionals such as lawyers and accountants during the planning phase was using “cheap money.” That’s because it costs less and produces far better results than having to consult with these folks after the fact of a disaster that occurred because you didn’t know what you were doing.

My Father's Last Wishes (Physician's Directives)

When my Father was towards the end of his life I realized just how important it is to have your legal papers in order. My parents, being much older, did it when I was fairly young. They explained it to me but I didn't really understand. Here I was at the age of 29, going over those papers with a fine tooth comb trying to make sense of my Father's last wishes. Due to his Alzheimer's I was his guardian. He was now in a nursing facility. He had recently been moved to the nursing unit, something I did not agree with. I was called in by the staff to discuss my Father's deteriorating condition. Because of my age, they treated me with very little respect and as if I had no idea what I was talking about. With my Father's papers in hand I went to the meeting, knowing it was going we were not going to see eye to eye. 

Visualize Success

[Guest Post Provided by Dr. Fred Luskin]

Here's a simple experiment that anyone can practice to experience first hand how our ability to visualize affects us physically.

Right now imagine yourself in your kitchen standing over a cutting board. You have in front of you a knife and a basket of delicious fruit. From that bowl select a beautiful orange, fragrant and heavy with juice, and place it on the cutting board. Notice the brightness of its orange color and the familiar texture of its rind. Then slowly cut the orange in half, and then into quarters. Notice the difference in color and texture between the cut surfaces and the peel. In your mind see yourself pick up one piece and slowly raise it to your mouth. Notice how you anticipate the taste - how familiar is the fragrance. Then picture yourself biting into the orange to capture its sweetness.

Most people feel an actual release of saliva from the back of their cheeks. If thinking about a juicy orange for even a few seconds, makes you salivate, what happens when you think of or see yourself as stressed out for hours, days, weeks, and even months on end? It is obvious that seeing those negative images in your mind has a detrimental physical effect on your body. This effect occurs through the same pathways as imaging the orange allowed your body to generate saliva.

How to Talk About Pending Death

Lately, it seems like I’ve had a bunch of friends who are facing THE talk with aging parents or spouses who are slipping into dementia. No, it’s not the birds and bees, it’s about advance directives.

Here’s what I’ve suggested. Start the conversation by gently probing loved ones’ thoughts about their future:

• How are you feeling now?
• Have you given any thought to what will be happening a week from now, a month from now, in a few months?
• What do you want to happen?

With this as a starting point, it can be possible to move into a discussion of wants and needs in their process of dying.

If the patient is in denial, this idea isn’t going to work. They’ll tell you they’re planning to get back to normal life next week, when you know that’s clearly not going to be the case. Don’t beat your head against their brick wall of denial. Set the conversation aside and come back to it when they are more open to the reality of their medical circumstances.

Mapping Your Loved One's Life

Today we're going to take one more look at caregiving road maps.  Other than a medical journal and advance directives, the third map you need as a caregiver is a life documents file.

Life is complicated, so there's a lot of "stuff" that needs to go into this file-- all of your loved one's important life documents, financial information and people who may need to be contacted.  I've created a list, called The Tool Box, as part of the Blueprint for Caregiving series.  It's much like The Medical Journal, only it's for all the non-medical information.  You can find it at www.blueprintforcaregiving.com.

If you'd rather create your own, here's a sample of the documents that it should contain.  I'm sure you can come up with the additional information from your loved one's life that need to be added.

• Birth and marriage information and paperwork;
• Education;
• Employment history;

Introducing Joanne Reynolds: Greetings From Your Caregiving Coach

Hello, caregivers!

My name is Joanne Reynolds.  I think of myself as a caregiving coach because I spend my time working with caregivers either directly in classes and workshops, or through all kinds of electronic connections-- a monthly email newsletter (it's free; you can sign-up at www.blueprintforcaregiving.com), blogs (www.authorcentral.amazon.com and www.blueprintforcaregiving.blogspot.com) and posts at sites like this one.

I have had a lot of experience as a caregiver to five family members-- my mother, my grandmother, my mother-in-law, my sister and my father.  In between these there were other less intensive experiences that helped me learn still more about the work of caregiving.  I decided the best way to share my knowledge was to write a book on caregiving, which was published in 2006.  That launched the workshops and classes. 

My most recent book, Search for Light: Ten Curcial Lessons for Caregivers was released in January by Tate Publishing.  At the same time, its supplment, the Blueprint for Caregiving series, was also released.  May is the projected release date of the audio version of all four blueprints-- for elder caregiving, for cancer caregiving, for dementia caregiving, and the generalized version for all other caregiving.