Advance health care directive
Ending life on your terms | Opinion | The Seattle Times. by syndicated columnist, Froma Harrop.
Being prepared, well in advance of needing to be, will serve you well.
All our lives, we set out on new adventures having prepared for them to the best of our abilities:
- First day of school;
- The start of a new job;
- Preparing for a first date;
- Wedding preparations;
- Organizing a Holiday meal;
- Even something as mundane as putting together a grocery shopping list.
We know how to be at our best, and being at our best means painstakingly and carefully preparing for important events in our life. You didn’t personally have the option of preparing for your birth, but you do have the option, right now, to prepare for your death.
What does it mean to end our life on our own terms? This doesn’t have to be a controversial topic. I’m not talking about assisted suicide/right to die matters. What I am talking about, however, is the importance of each of us to spell out in painstakingly and carefully prepared language, all that you want done – or not done – when you are determined to have an irreversible fatal disease.
Death is such a taboo subject.
Why is that? None of us will avoid the inevitable, but many of us avoid laying down our wishes regarding that final time in our lives. The subject matter of the attached article relates to medical insurance companies reimbursing medical professionals for end-of-life counseling provided to their patients. I repeat, this counseling is not controversial. As Ms. Harrop states, “Critics of end-of-life discussions argue the doctors would ‘push’ patients to end their lives prematurely. Why would doctors do that? Where’s the financial incentive in losing a patient?”
The report Dying in America calls on Congress “to end the ‘perverse’ financial incentives that rush fragile patients into invasive medical treatments they’d prefer to avoid.” That being the case, it seems to me that counseling a patient about their dying wishes hurts, more than helps, the physician’s bottom line, so forget the nonsense about doctors encouraging patients to die sooner than later. That’s just hogwash.
“Meanwhile, there’s evidence that for some very ill people, a palliative approach may extend life longer than industrial-strength medicine.” And certainly ones final days without the poison of chemotherapy that has no prospect of curing a cancer, would be far more comfortable than if that therapy had been employed. “In a study of terminal lung cancer patients, the group that chose hospice care actually lived three months longer than those subjected to hard chemotherapy.” Again, that would be a more pleasant exit from this life than suffering the ravages of a chemo treatment that is not curative in nature.
“An end-of-life talk with a doctor spells out the options. Patients can use it as a basis for filling out an advance care directive – a form listing which treatments they would want or not want.” And let’s not forget that such a document only comes into play if the patient can no longer speak/express his or her wishes regarding their care. An advance care directive is a legal document and as such, spells out when it can be put in motion, and when it can not. If ever there’s a time when you can benefit from being a control freak, your final days is it.
This legal document is not just for the older population.
Once you’re considered an adult, you can decide what you want regarding your life. Don’t wait until it’s too late and someone else decides medical matters without your input.
When your children attained the age wherein having “The Talk” about sex and other scary things became unavoidable, you simply jumped in and winged it – wanting to explain as much to your kids as they needed to know but trying not to lend any encouragement towards participation in said scary things. Didn’t you feel better once you checked that “To Do” item off your child-rearing list? I know I did.
“The Other Talk” is that which you need to have with your adult-sized children, regardless of how uncomfortable you – or your children – are about topics such as: illness, death, and finances. Acccckkkkk!
Or perhaps it’s the other way around. The adult children are broaching these difficult topics with their parents in the hopes that said parents will do something about these unavoidable issues. Regardless of who is on the receiving end of these discussions, they should be considered mandatory in every family.
Consider this scenario: Dad is dying of cancer and in a coma. Your mother has already passed on, and you have no idea what your dad wants. His cancer is inoperable and he’s having more and more difficulty breathing and he hasn’t had any nourishment by mouth since he went into a coma. Does he want breathing assistance? Does he want intravenous liquids and nourishment? Does he want pain medication to help him through the extreme pain that cancer causes, even if the medication hastens his death?
What’s a son or daughter to do? Wing it?
Let’s look at another scenario: Mom is in the advanced stages of Alzheimer’s and is unconscious more than she is conscious. There is no reversal possible of the debilitating effect this disease has had on her body: her doctor tells the family that their mother’s ability to swallow is greatly compromised, her breathing is becoming more and more labored, and she has shown no interest whatsoever in food or liquids. Her body is in the active stages of dying.
In this scenario, dad is still living and cognitively competent and he has told the family and your mother’s doctor that he wants every single measure possible to be employed to keep his bride of sixty-five years alive. You, however, have a copy of your mother’s living will/advanced health care directive – as does your father – which contains conflicting wishes to those of your father. Your mother wants no extraordinary measures employed – not a respirator, not a gastric feeding tube, no intravenous nourishment, nothing except for medication that will make her as comfortable as possible as she leaves this world. When your mother was fully aware and cognitively healthy, she had her wishes incorporated into a legal document, determined to take the responsibility of making such decisions out of her loved ones’ hands.
What’s a son or daughter to do? Follow mom’s wishes.
What a gift that is – carrying out your loved one’s wishes when she is no longer able to verbalize them. It would still be a gift if mom’s wishes were clearly spelled out that she wanted everything done to keep her alive as long as possible. The point is not what was decided that is important – it’s that the decision had already been made – a decision that remained in the hands of the patient/family member.
Both of my parents gifted me and my two siblings with documented specific wishes for their life and death. My mother unexpectedly died in her sleep on September 24th, 1994 at the age of 77 – something she had wished and hoped for her entire life – who doesn’t? My father died on October 13th, 2007 at the age of 89 from complications of Alzheimer’s and cancer. There was no guessing when it came to the time when us three adult kids rushed to his bedside. He was comfortable in his death, and we honored him by following his wishes for no intervention. Did I want my dad to die? God no. I wanted him to live forever; but none of us gets to do that, so I’m glad that my father was allowed to take his last breath and leave this world his way.
The above link, from a December 2012 NBC News report, addresses the conversations that many of us – well, many of you anyway – still need to have with your parents. (My mother died in 1994, my father in 2007 – those conversations have long since taken place.) In many respects, my brother and sister and I were fortunate because in our family, the topic of sickness and death seemed no different from discussing that night’s dinner menu – perhaps even easier. That’s just how it was in our household growing up. But I’m aware that universally, that is not the case.
In my article Cost of Dying: planning for a good death, from advance directive to talking with your family, I’ve attached an exceptional article about a few people’s experiences discussing how their loved ones want to die. By now I may have lost some of you, but bear with me. There’s a reason why I’ve chosen to address this topic.
GIFTS. Who doesn’t like receiving gifts? Most of us get a kick out of being handed a package with a fully wrapped surprise within and told to “open it!” “What, for me?” Yes – for you. Perhaps the gift is something we didn’t expect, or we’ve sufficiently hinted our exact wishes and finally someone gifted us with that long sought after item. Fun, isn’t it? Someone cared enough to gift you with something you’ve always wanted or you receive something that you didn’t know you wanted, but it turns out, you do!!!
THE GIFT THAT KEEPS ON GIVING. A few years ago, I succeeded in convincing my wonderful hubby that we needed to put together our “last wishes” which of course includes a Will, but more importantly, an Advanced Health Care Directive. My husband is one of those who isn’t exactly comfortable sitting around the dinner table – or any table for that matter – talking about death. I get that – I really do. So I couched this discussion by talking about what a gift my parents, and his parents, gave their families by specifically outlining what to do when it came time to do something.
When your loved one is heading towards the great beyond, it’s comforting to already have his or her wishes on paper and ready to execute – no pun intended. I’ll use my father as an example. My father died at the age of 89 on October 13, 2007. Official cause of death was prostate cancer but advanced Alzheimer’s was a huge factor in his death. There is no way my father would have a) survived cancer surgery; and b) even wanted cancer surgery at that stage of his dying. His Advanced Health Care Directive very clearly stated his wishes and us three siblings had copies of that document and respectfully went along with his wishes. Dad saved us the stress of making an extremely difficult guesstimate of what he would have wanted in the midst of that situation. His dying was already an emotional experience so I can’t imagine having some sort of discussion about when to stop treating his illnesses.
The legal document, drafted years earlier, was drafted for this specific time. Even if dad had been conscious – and he was not – his dementia would have prevented him from making a well-informed decision. If ever there was a time when dad’s gift was ready to be presented – this was it. That gift allowed us to spend our last hours with him simply loving him; singing to him; and telling him how grateful we were to have him as our dad. Beautiful.
You don’t have to wait until you are 50 years or older to put your wishes in print. Old people aren’t the only ones dying who require some sort of affirmative decision-making. Someone in their thirties could be in a horrific vehicle accident and end up lingering on the precipice of death. A forty-year old person could have a stroke and be on that same precipice. It’s never too early to do something about your exit from this world as we know it. You can always change your mind later – you decide that you do, or do not, want hydration, so you revise the document. That’s the beauty of word processing – it’s changeable, and once you get that revised version documented by witnesses, you’re good to go! Literally.
If you choose to use an attorney, you can go through the local Bar Association for referrals or you can attempt the same outcome by doing it yourself. Many office supply stores have boiler plate legal documents you can readily purchase – but be certain to purchase the forms that contain the required legal verbiage for your state or territory. Additionally, organizations such as Compassion and Choices provides forms that you can download from their website, even a form that has a Dementia Provision. Who woulda thunk? Not me.
The Holidays may be over, but the season of gift-giving is not. Won’t you consider giving your loved ones one more gift this year?
Most people don’t want to talk about end-of-life issues but all of us know it’s a topic requiring early discussion and appropriate timing to be of any use when emotional, and sometimes emergent, decisions must be made.
My siblings and I benefited from my parents’ end-of-life documents that dictated their wishes should we need to become involved. My mother died in her sleep in 1994 so no active involvement was necessary but my father, suffering with Alzheimer’s for five years by the time he died in 2007, gave us a gift by spelling out in detail his end-of-life wishes set in place at least a decade before he died. Think of an Advanced Directive or Living Will as a gift to your loved ones. It certainly was a gift to my siblings and me.
An organization in Washington state, Compassion & Choices, worked with Seattle University Clinical Law Professor, Lisa Brodoff, to create a new advance directive for people with Alzheimer’s and other dementia. This same law professor was instrumental in the passage of legislation in Washington State creating the Mental Health Advance Directive for people with mental illness. This statute is considered to be model legislation for other states wanting to expand the rights and planning options for people with mental illness. Bravo Washington State!!!
Although not yet available, the new Alzheimer’s/Dementia Advance Directive will be based on one created by Professor Brodoff for a 2009 Elder Law Journal article titled (excerpt attached): Planning for Alzheimer’s Disease with Mental Health Directives. The new Alzheimer’s/Dementia advance directive is not intended to replace existing end-of-life documents such as a Living Will and/or Durable Power of Attorney for Health Care, but is designed to work in concert with those documents to ensure that any issues important to the patient with dementia that are not addressed in standard advance directives are honored as much as possible.
What additional issues are addressed in the new advance directive for those with Alzheimer’s or other dementia?
Potential issues that might be addressed are preferences regarding:
- care in and outside of the home;
- financing of said care;
- caregiver choices;
- involuntary commitment;
- consent to participation in drug trials;
- suspension of driving privileges; and
- any future intimate relationships.
To get on the mailing list in Washington state to receive a copy of the new advance directive contact Compassion Washington: by email, info@CompassionWA.org or by calling their office at: 206.256.1636 or Toll free: 1-877-222-2816. At the very least, regardless of where you live, using their model as a guide when creating your own Advance Directive may be helpful when such Directive affects the life of a loved one with dementia. Being prepared for the unexpected, or even what you indeed suspect might be a future health issue, provide peace of mind for the patient and for his or her caregiver.
That’s a priceless gift to be sure.