My Thoughts, My Journey, and End-of-Life Care

The Importance of Having an Advanced Directive

Many years ago, when I interviewed for a job as a Physician Assistant in an oncology office, the doctor asked me "why” I wanted to work in a difficult field such as oncology. My response was something I had thought about for years. Everybody deserved a "good death," the truth, and the right to make decisions. This went back to my being 16 when my mother died after unsuccessful cardiac surgery to replace her aortic and mitral valves. My last memory of my mother was in the ICU, intubated (with a breathing tube), and more machines than I ever could have imagined hooked up to her. Thus my journey began. She died six hours later without being resuscitated. Nature, and my father, allowed her to die. And for that, I will be forever grateful.

Back in the early '70s, we did not discuss death. My mother died, and that was it. I was a motherless teenager, but nobody talked about it. She died, I returned to school, people whispered around me, and life continued. There was no therapy; everything was just swept under the rug.

Fast forward to Elizabeth Kubler Ross, and death became a "hot topic." We can talk about it now. We can discuss what we want to be done if there is no hope or cure. My years as a PA in oncology included many sleepless nights worrying about my patients and how to talk with them. I was very fortunate as I worked with an oncologist who believed in "hope for the best, expect the worst." When a patient was diagnosed with stage 4 cancer (metastatic with no hope for cure), we talked with them about the journey, about being prepared, and understanding that no matter how hard you "fought," sometimes cancer was bigger than everyone. All we can do is accept it and prepare. Talk with our loved ones, accept comfort care, and hospice care, which helps people live without pain (and be able to control it), talk to our loved ones about dying and choose how and hopefully where and with whom to die.

Over the summer, I got involved with a new client, a lovely woman in her mid-seventies with stage 4 metastatic cancer. As sick as she was, she was determined she would not die. I tried harder than I ever had to explain to her that we don't always have a choice and that she could have a chance to die comfortably at home with friends and family with her. And no matter what I said (nor what her doctor or her loved ones told her), she refused and wanted to "keep fighting." As I write this, she is currently being intubated, and I can't help but feel as if I failed her. Both her POA (power of attorney) and I are devastated, as she didn't have to die this way, but she will. She is now intubated, and at some point, the decision will be made (not by me) to "unplug her," and we will all mourn and talk about "what if." I had promised her she wouldn't die alone, and she won't. Instead, she will die in the ICU hooked up to all the machines, which is not peaceful. I had it all arranged to bring her home to pass without being hooked up to any lines or tubes. And I failed. To all those who care(d) about her (including me, being her advocate for almost seven months), I have learned that despite her being a curmudgeon and cantankerous, I grew to care for her. We will always wonder, "What else could we have done." And with her, probably nothing.

We still have a long way to go in discussing and dealing with end-of-life care. I hope it happens soon because it is too difficult for the loved ones left behind.

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 Advanced Directives

 "Do you have an Advance Directive?" We are typically asked this question anytime we go to a hospital, surgical center, or emergency room. If you say "no," you are often given a lengthy form and asked to fill it out without explanation.  And if you say "yes," the staff member will usually go on to the next question without asking for a copy or who has a copy.  

 So, what is an Advance Directive, how does it differ from a living will, and why do we need this, especially if you are young and healthy? 

 The actual definition of an Advance Directive is "a written statement of a person's wishes regarding medical treatment, often to include a living will be made to ensure those wishes are carried out should the person be unable to communicate them to a doctor." 

 Every state has its own Advance Directive, but typically they are very similar, and frequently states will accept them as written in a different state.  The vast majority of Advance Directives have the following information: selecting a health care proxy and treatment preferences.

 A health care proxy is a person you have chosen to represent you to the medical staff taking care of you, if and only IF you cannot communicate your wishes.  You should choose this person after much thought and conversation with the person.  They should know if you want to have CPR (cardiopulmonary resuscitation) should your heart stop, if you're willing to be on a ventilator and for how long, and how aggressive (or not) you want your health care team to be. You should also choose two backup people if the person you choose is unable to make the potential decisions.

 Frequently many people fill out a "living will," which summarizes your wishes should you become ill.  For example, it may stipulate whether you want CPR or intubated (if deemed medically indicated), but it does not list a health care proxy. 

 Many of us do not complete an Advance Directive as there is a misnomer that you cannot do this without an attorney, which is incorrect. All you need is two people to sign the form and witness your signature in most states.  The only stipulation is that neither of these witnesses can benefit from your death or be relatives. You may need to get this witnessed in a handful of states, but check your states' laws.  You can download this form online and fill it out for the most part.   Once the form is completed, you must keep this in a place to be utilized if necessary.  Most EMTs (those that typically respond to 911 calls) know to look on the side of the refrigerator or even in the freezer.  A copy should be given to all listed on the form and to your doctor and the hospital you typically go to if ill. 

 One of the crucial things to do is fill out forms for your single adult children.  When they go off to college and are 18 and become ill, even as a parent, the doctors cannot speak with you or allow you to decide on the management of your child. There is a website called MamaBearLegalForms, and for a small fee, you receive:

1-health power of attorney document

2-financial power of attorney document

3-HIPAA release form.

And don't forget your older adult children.  Many of us have "children" who are still single in their 20's and 30's and need Advance Directives. 

 Keep in mind that Advance Directives can be changed at any time (for example if you move or possibly have a falling out with a proxy) If you do change them be sure that everyone involved has the new copy.

 Having an Advance Directive means that should you become ill, you will have the treatment you wish.  This may include having a feeding tube, being on a ventilator (breathing machine) if you can't breathe on your own (quite common during the Covid pandemic), receiving blood, antibiotics, or even being treated with chemotherapy.

 The most important thing to remember for Advance Directives to be helpful is that it all begins with a conversation with your loved ones (often more than one conversation).   Help them understand what you want and why (and learn what they wish). You may not want CPR because you fear possibly breaking ribs and being put on a ventilator while your daughter wants you to live to see your granddaughter get married.  You certainly don't want to wait to have this conversation if you are in ICU in critical condition.

 There is an organization called "The Conversation Project," I highly recommend reading about this and discussing this with your family and loved ones while you are all healthy.  Things can change in a second, and we all need to be prepared.

 The majority of us fear illness and death, but it will happen, and we can make it easier on our loved ones if we prepare ahead of time, and signing (and discussing the "what ifs") is an excellent first step.

 I can help you with this process.  Call or email me for more information. 410-978-3763 or myra@katzadvocate.com