Apologia for these journals:
They are not about taking care of a relative with moderate to severe Alzheimer's/senile dementia.
For an explanation of what these journals are about, click the link above.
For internet sources that are about caring for relatives with moderate to severe
Alzheimer's/senile dementia, click through the Honorable Alzheimer's Blogs in my
links section to the right.
With much thanks to The Good Death,...
... an online journal about all things death oriented (no, it's not at all morbid, in our casual understanding of the term) and its author, Jessica Knapp, I ran across an interesting document mentioned in one of her posts. It's a type of Living Will that goes beyond the typical in a variety of important ways. To quote the website Aging With Dignity, on which the Five Wishes Advance Directive is featured (along with a variety of other "aging with dignity" issues), it allows the signer to "use your words to express your wishes, communicating in a language that you understand". Aside from the usual Living Will concerns, which it allows the signer to address much more specifically than the typical Living Will, it also deals with "how you want people to treat you" and "what you want loved ones to know". My curiosity was piqued, so I clicked into the Five Wishes Preview featured on the site and discovered more than a preview. It appears that the entire structure and wording of the Five Wishes document is included in the pdf file (which can be downloaded to your hard drive by simply saving it). There is also a link on this site which states that they have reprinted the entire Five Wishes document "with permission". The reprinting matches the "Preview" in every respect. This site also cautions: "To use this as a legal document in those states that accept it, ...you MUST send for the paper version (only $5)." I doubt this. I rather suspect that this is a tip of the hat to the profit motive.
Both files include instructions on how to legalize the document, a thumbnail history of the document's origin and specific state instructions, where applicable, regarding additional legal requirements. It also advises how to, for instance, pick someone as your "health care agent". The latter contains some surprising but, in retrospect, wise suggestions regarding who you should not appoint to this position.
I especially like the headings in some of the wishes. Wish 2, for instance, includes the headings: "What You Should Keep In Mind As My Caregiver" and "What Life Support Means To Me". The section on what specific types of treatment the signer wishes as death approaches is divided into four parts including one entitled "In Another Condition In Which I Do Not Want To Be Kept Alive". Most provocative, though, are some of the requests under the last three wishes, all of which describe in brief yet startling detail the type of treatment one would like as one approaches death (i.e., "I wish to be massaged with warm oils..." and "I wish to have my favorite music played..." in Wish 3). "My Wish For What I Want My Loved Ones to Know", #5, includes general requests for and thoughts of forgiveness in addition to the general attitudes and demeanor the dying one wishes their friends and relatives to assume as they approach and, afterwards, come to grips with the loss of the dying one.
If you're a regular reader, it shouldn't surprise you that I am brimming with musings about some of the aspects of the Five Wishes document.
- As I read the standard (to the Five Wishes document) list of stipulations under the heading "My Wish For How Comfortable I Want To Be" I am reminded of the discussion my mother and I had about how much pain and palliative medicine she would want during the active dying phase. This was an important discussion for us. Although I was caught off guard by her actual active death phase and was never sure that she was actively dying, especially since she was insistent that she wasn't as long as she was able to respond to my questions about her state, I am sure that she was neither over nor under medicated from her point of view. Her awareness, as well, that something "different" was happening combined with her lack of distress over this difference allowed me to know, in retrospect, that, despite her insistence that she wasn't dying and would never die, she was aware of the experience and its uniqueness. I can't say for certain, but from my knowledge of her, I'm guessing that her awareness was to her taste, even when the experience, itself, appeared, to me, to be surprising, even, maybe, unpleasantly so.
- Nonetheless, Wish Three is a much needed primer on how to physically and temperamentally attend to a dying one. It is designed to encourage the dying one's attendants to place themselves, physically and emotionally, in the place of the dying one and consider what would be comfortable to a person in such a state even if that person is unable to communicate their needs.
- I can easily and authoritatively imagine what my mother's reaction would have been to the requests, in the same section, involving things like music, readings, prayers, warm oil massages, etc. I can almost hear her say, "Well, if we're doing these things and I happen to die, fine. But I may die when these things aren't being done. I can't see any reason to go to any great lengths to guess when I'm dying and scurry around to do these things." In effect, that's what happened. Since we continued her life on hospice exactly as we'd be living pre-hospice and pre-lung-cancer-diagnosis, her last months, indeed, included all of the comfort requests and more that were eccentric to her. However, the only one that was specifically followed during her last hours was the oil massage. The "personal care" agenda (teeth brushing, nail clipping, etc.) was not followed during her last hours nor, for that matter, during her last day and a half, except for a much less strenuous cleaning than usual when she decided, Sunday morning, less than 24 hours before she died, that she wanted to arise, watch a movie and eat. She barely tolerated having her underwear changed when it became necessary. I certainly wasn't about to try to brush her teeth or clip her nails.
Interesting about her nails. The week before she died I noticed as a part of our regular routine that her finger and toe nails needed clipping. They weren't unwieldy but, you know, they could've used a bit of a trim. This was normally a task I accomplished in the evening while she was watching TV, just before I rubbed her legs and arms with lotion. It was also a grooming activity she enjoyed. The last time I attempted it, though, as I started on her fingers she complained that it hurt. I thought I might have gotten too close to the quick or the finger pad, even though I was always careful with this because my mother was very sensitive to pressure on her finger tips. I pulled the clipper back to the point of barely taking off a sliver of nail and tried again. She yelped! We abandoned the task. I wonder, now, if super-sensitivity is a hallmark of a body heading toward shut down.
- Regarding Wishes 4 and 5, which involve requests specific to the hours just before death such as the desire to have people around and how one wishes these people to comport themselves at the deathbed:
- I find the following troublesome: "I wish to have people with me when possible. I want someone to be with me when it seems that death may come at anytime." I am reminded of something I read in both the Final... books: That it isn't uncommon for people to want to die unaccompanied and the way this desire usually plays out is that the dying one waits to expire until everyone is out of the room. I suspect that, in contemplating our deaths, we all think that we would prefer to have a loved one, or more, at our side when the moment arrives. I also suspect that it comes as a surprise to a dying one to realize they'd prefer to be left alone at that moment, so I don't see how this desire could be anticipated. Thinking about this caused me to wonder about a lot of the wishes we design for our deaths when our deaths are not on our obvious horizon.
- One request that is startlingly absent from this section, too, is a wish to have beloved pets not only near but allowed intimate access to the dying one, if possible. I am sure that having The Little Girl, one of our cats, curled at her feet was a primary factor in keeping my mother calm as she negotiated her last, most challenging and surprising night on earth.
- The Fourth Wish request, "I wish to be cared for with kindness and cheerfulness, not sadness", brings to mind this excerpt from the movie "Yes" I recently published over at In Sane Grief. This request sounds so magnanimous and politically correct and, yet, I wonder, how often does it happen that a dying one would prefer to see a little grief drama at their bedside; wouldn't mind if people cried and asked them not to "go"? The point I want to make is that perhaps yet another important wish has been left off this list: The desire to allow the event of death to be what it is, what the moment makes of it, and for those looking on to be sensitive enough to the dying one's condition so that if, for instance, some drama seems in order, despite what the dying one specified when dying was on her or his radar screen only as an objective possibility, not an in-one's-face reality, that drama is allowed and welcomed.
- Wish 5 is full of politically correct attitude. Some of the wishes I can imagine most people want at their death bed: Wanting family and friends to know that the dying one loves them, for instance, unless, of course, the dying one hates their family. It's easy, though, for me to imagine scenarios of prolonged death approaches in which the dying one may wish to express stubborn desires to refuse to offer or ask for forgiveness; a desire to express bilious thoughts and feelings one last time; a desire to be assured that long standing family conflicts continue.
- Another request in this section, the wish that family and friends remember the dying one as she or he was before the terminal illness, well, that one bothers me, too. It implies that a person is not a totality of all her experiences but only those that are easy for others to handle. I have, for instance, no desire to not remember my mother as she experienced dementia. Her peculiar path through dementia revealed so much to me about her character that I would likely have missed, otherwise. The way she died was a revelation to me. As the Final... authors assert, if it is at all true that one lives in character it is even more true that one dies in character. It seems inhumane to me to purposely tune out this last succinct character statement by insisting, as we, in this society at this time, believe is appropriate, that "me" dying or "me" working my way through a difficult disease or period in "my" life is somehow beside the point of who "I" am.
- Wish 5 contains a few requests that make assumptions about a persons beliefs about death that may not be true but are, at this time, politically correct. One of them specifies that family and friends "know" that the dying one isn't afraid of dying and believes it is "not an end, but a new beginning for me." What if the dying one doesn't believe this? What, too, if the dying one has a preference for celebrating their approaching death as an end? What if the dying one actually is afraid of death but realizes this only as death approaches? What then? How would you want someone standing sentry to react to your fear in the maw of death?
- The last request in the Wish 5 section that troubles me is the desire for friends and family "to get counseling if they have trouble with my death. I want memories of my life to give them joy and not sorrow." This is an attitude toward grieving in our particular society that creates an enormous struggle for mourners. It is so ubiquitous that not one of my grief support group meetings goes by but what someone doesn't express some variety of the following: "I feel obligated not to express my sorrow." Just yesterday, at a Holiday Grief Support Work Shop, a woman said that she's trying hard to keep busy so that she doesn't wallow in her sorrow. As the facilitator continued to question her it became apparent that the problem wasn't that she was wallowing, it was that she was denying herself the opportunity to experience her sorrow and travel through it. As our facilitator says, grief will have its way with you, even if you refuse to acknowledge it. If, however, you refuse to acknowledge it, grief's way will be more insidious and difficult to manage than if you welcome it. It is astonishing how many times someone in group will say, out of an incomprehensible fog, "I'm having trouble with thus-and-such and I don't understand why." Time after time our facilitator gently responds, "Because you lost your [wife, or sibling, or child, or parent]." The pressure to "get better", to recover from grief is internal and external in our society, which is one of the reasons that many grief support groups provide the support one absolutely needs in this society to insist on one's own grief needs.
A conundrum is posed by this one wish of joy over sorrow. On the one hand, in our society, even mild grief requires special permission, so it's probably a good idea for almost everyone who is grieving to acknowledge and seek support from a community of grievers, whether that be in one's mind, among one's compatriots, in books or in a support group. On the other hand, the particular joy vs. sorrow wish continues to codify that, somehow, sorrow isn't all right, it's a perversion of living. Let me tell you, it isn't. One thing I've learned from grieving my mother is that the ability to feel profound sorrow extends one's humanity. Wouldn't it be better if, somehow, in very specific phrases, the Five Wishes document went a step or two toward acknowledging the legitimacy and multi-faceted nature of sorrow in the face of the haunting mysteries of loss and death, assuming that the dying one wanted this acknowledgment?
As for myself? Well, at the moment I've got a peculiar view of such documents. I'm in a period where I still don't consider myself out of the woods as far as "excess mortality" is concerned. I still have days, though much less frequent than previously, during which I hope I am no longer alive by the end of the day or, upon retiring, I hope I "wake up dead". I also consider scenarios in which I, for instance, fall at home while doing some chore and am left in an irreversible coma on life support. When I envision these possibilities I derive a perverse delight from imagining the mess either scenario would leave in my dead or almost-dead wake. In addition, I rather like the idea that anyone who becomes aware of either circumstance will be required, by my lack of documented wishes, to react from their own resources without dictation from me.
In my usual manner of doing things with my ass turned askew, after I wrote the above I decided to research commentary on the Five Wishes document. Wow! It seems that there is significant concern about the oblique intentions of this document and the legality of Wishes 1 & 2. Here's a list of the links I discovered, in the order I discovered them, with a short summary of the information each contains:
- Wikipedia's Article
Mostly a cursory description of the document, this link also suggested to me that there may be legal problems involved in using this document and spurred me to further research, included in the next four links.
- Huffington Post's review of the document by Barbara Coombs Lee
This article takes issue with the religious, pro-life-in-regards-to-death underpinnings of Five Wishes and discusses the confusing legal ramifications of the wording in this document once push comes to shove and medical personnel become involved. Ms. Lee, toward the end of her article, states: "My advice --- use your own state forms. You can download them free, along with instructions and useful additions to the form, at the Compassion & Choices website." In that statement, the phrases "download them free" and "Compassion & Choices website" are links.
- Powers of Attorney vs. The Five Wishes Advance Directive
This article, while specific to Illinois, raises some interesting questions about the document's legal viability that should probably be researched from state to state. It directed me to the article it summarizes in the IBJ that is a detailed analysis of the Five Wishes Advanced Directive as it relates to Illinois law. The article it summarizes can be accessed through the next link.
- Be Careful What You Wish For
Although this article is specific to Illinois state law, it raises interesting legal questions that could conceivably affect its use in any state. It fleshes out many of the concerns expressed by Ms. Lee in the Huffington Post article, linked above.
- Five Wishes: A Rebuttal
In the interest of fairness and curiosity I included this link, which is a rebuttal of the articles in links 3 and 4 above. It includes commentary from the website author about the rebuttal, which is interesting in itself.
This article reminded me of an incident that took place during my mother's last hospital stay that underscores the contention that any legal document can be undermined. A few days into my mother's stay I decided I wanted to look at her medical records. The Health Proxy my mother signed in 2004 allows me this right. The head nurse on the floor that night, though, refused me, citing the Proxy as stating that it was to be invoked if the patient was reasonably not able to manage her own care. The head nurse had somehow decided, despite that my mother could barely mumble, was clearly more confused than usual and wasn't even sure where she was, that she was "reasonably" capable, asked her if she wanted me to see her records. My mother, after considerable inane head swinging and other indications that she wasn't clear about where she was and what was happening around her, said, "No." The nurse decided to heed this particular, "no", even though the only word my mother had uttered in response to any attention over her entire stay had been "no". I was very familiar with this strategy of hers. It was her way of expressing her consternation at the situation. The head nurse, however, had no such history with her and, as well, had been giving me covert but well understood messages that my constant presence and oversight at my mother's bedside were annoying him, even though he often expressed appreciation for the help I also offered.
I decided to consult the hospitalist, with whom I was more than familiar by this time. He reiterated the head nurse's stance.
I responded that this reasoning was faulty and cited detailed and determined explanations for exactly why her behavior was as it was. I asked the physician to reconsider. He decided to administer an off the cuff mini-mental exam. The results convinced him that I was right. It was a good thing, too, because once I was granted access to the records, with his oversight, I discovered that some of the items and dosages on the detailed medication list I'd submitted at her entry had been overlooked or mis-transcribed; one medication that her PCP had, for specific medical reasons, warned against was being given to her and, as we later discovered, was part of the reason for her increased confusion; an additional diagnosis had been granted her by a social worker as "failure to thrive", which I was able to convince the physician was wrong; my involvement in and knowledge about my mother's medical care had been totally misrepresented by the same social worker and had been part of the reason why the head nurse and the doctor were leery of my involvement as Health Care Proxy.
Although all this was corrected, it was a frustrating lesson in what can happen when legalese and medicine mix.
Despite the concerns listed above, which require serious deliberation, I still think The Five Wishes Document is a serviceable overture. If nothing else, it introduces the possibility of, say, writing a cannon into the composition of your death experience.
Thank you for the kind words about Five Wishes in your posting. We always appreciate receiving feedback from people who have used Five Wishes. Over the years we’ve incorporated several of the suggestions we’ve received into various revised versions of Five Wishes. If I may, a few comments:
You correctly point out that Five Wishes is both a legal form as well as a great discussion tool. It frames complex medical and legal issues in simple English (or in 22 other languages) and deals with the things people say matter most to them – dignity, comfort, family, personal/spiritual matters, etc. It doesn’t attempt to steer users toward any particular belief or action. Anything you disagree with you cross out, and we encourage people to add as much specificity in their wishes as they desire. Some write pages and pages, and that’s fine.
Aging with Dignity founder and Five Wishes creator Jim Towey was legal counsel to Mother Teresa of Calcutta for 12 years until her death. Her life and work inspired Five Wishes, but ours is not a religious document. People of all faiths or no faith at all use and appreciate Five Wishes.
The two lawyers who wrote the Illinois Bar Journal article, as our letter of reply to the editor details, raised several what-if and maybe-could scenarios that simply have never arisen anywhere in the real world, at least not in the 12 years that Five Wishes has been in existence, nor among the 13 million copies of Five Wishes in national circulation. We understand the IBJ is set to publish another article soon on Five Wishes that points out the flawed analysis in the first.
Indeed, Five Wishes meets the legal requirements of 42 states. The remaining eight states have antiquated laws that require its residents to use government-approved forms and wording and/or that require lengthy warnings (one state’s is 1,700 words). We advise people to attach their completed Five Wishes to the signed state form and to give the health care agent, the physician, health care providers and others a copy.
People can certainly make use of free state forms or those provided by other non-profit groups like ours, as they choose. Our goal is to improve end of life care and respect for the dignity of all people – particularly those most vulnerable – as they age. Having a completed advance directive in place is a good means to that end.
Your readers should also know, if they do not already, that the organization “Compassion & Choices” is the former Hemlock Society. It pushes an assisted suicide philosophy and agenda we do not share.
And finally, one can indeed download the sample PDF of Five Wishes at http://www.agingwithdignity.org/forms/5wishes.pdf, but note that it is read-only and cannot be printed out. The website you noted that reproduces the text of Five Wishes “with permission” has a much older version of the document. Also, we’re hoping to have an online version of Five Wishes ready to go very soon.
President, Aging with Dignity
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson