What If?

I am having outpatient surgery next week. The procedure is fairly quick, I’m told. I do not need to go under general anesthesia. I will be sedated, but not intubated.

Given my reduced respiratory function, any surgery has risks. The last time I went in for “routine” outpatient surgery, I ended up spending ten days in the hospital – four of them in a coma in the Intensive Care Unit! I do not rush into surgery without heavily weighing pros and cons.

This time, I have decided the pros (being able to maintain adequate hydration without worrying about pee math) outweigh the potential harm. I am moving forward with my plan for a suprapubic catheter, which I first discussed in this post.

In preparation for surgery, I am updating my advance directives. What – you don’t know many forty-four year old women with advance directives?

I first considered writing my advance directives for my friends and family when I was starting my career as a speech-language pathologist in nursing homes and geriatric rehabilitation facilities. Each day, I saw families struggle with what they thought their loved ones would want to have happen in their medical care. Too often, discussions about important matters such as artificial nutrition and ventilation did not happen until a person faced a life-changing event such as a stroke or head injury.

Living with what some medical providers have called a “terminal illness,” and being described as a person who “requires maximum assistance with all tasks,” means that some people look at the surface of my life and assume I have a poor quality of life. They see a disabled woman using a wheelchair who cannot function without her Personal Assistance staff and mistakenly think I must be struggling with life.

Thankfully, I have communicated my wishes for my medical care to friends and family. They were my voice when I was incapacitated and could not speak. As I lay in the hospital bed, my sister made decisions based on what she knew I would want.

She knew what to do because we talked about it. I wrote it down and sent it to her. She asked questions, and I was honest.

This week is National Healthcare Decision Week here in the United States. If you go to their website, you can learn more about the steps you can take to better prepare for your future. Each day of the week has a theme and Thursday’s theme is “Spread the Word.”

So, I’m telling you I’ve updated my advance directives. I will be emailing them to the people I have designated to make decisions on my behalf should I become ill or incapacitated.

What about you? Even if you are a healthy, young person, illness and disability can happen to anyone at any time. If you are unable to speak for yourself, wouldn’t you want the people who will be advocating for you to know your wishes?

The National Health Care Decisions Day website has a page listing resources. You can find it here, along with tips for how to chose a health care proxy and how to talk to your doctor.

Start the conversation today!

Do You Have a Plan?

April 16 is National Healthcare Decision Day (NHDD) here in the United States. According to the NHDD website, the day exists to, “inspire, educate and empower the public and providers about the importance of advance care planning.” Everyone can benefit from talking about their healthcare choices and what they would like to have happen if they are not able to speak for themselves.

I have written before about my own experiences with advance care planning. I have been very vocal with those close to me about my wishes should I ever become unable to speak for myself. My first advance directives were written when I was twenty five. I have updated my health care proxy more than once since then. I am so grateful I took the time to have these difficult discussions at what many consider a young age.

In 2013, I entered the hospital for what was meant to be a routine outpatient surgery to remove my gallbladder. When the surgeon was unable to visualize the offending organ laparoscopically, he completed an open procedure. I knew this was the plan if laparoscopy did not work. I woke in the recovery room to learn I would be spending a few days in the hospital. My surgeon stood over me, telling me I had done very well during the procedure – as if I had done anything more taxing than sleep in an anesthesia-induced stupor!

That is the last memory I have from the seven days to follow. I was conscious for the next two days. I argued with the nurses about using a bedpan (I refused, and demanded a bedside commode), suggested my roommate try lamaze breathing for her constant pain, sent email and text messages and called family and friends. I even spent time on Facebook. But I don’t remember any of it.

I have no recollection of the thunderstorm which knocked out power and caused a flood in my room near the wall of windows. I can’t remember having discussions about discharge home and the extra personal assistance I would require. I only know what happened because I’ve read the hospital records and spoken with those who were there.

The surgery was on a Monday. Discharge was planned for Thursday. Sometime early in the morning on Thursday, as I was sleeping, I removed the Bi-Pap machine I wear at night. This machine is a non-invasive form of therapy which helps me maintain respiration at night while I am sleeping. My respiratory muscles are diminished so this machine makes sure I maintain adequate oxygen levels throughout the night.

When the nurse found me on her rounds, I was not breathing. I was unresponsive but still had a pulse. The medical professionals went to work quickly but I was unable to maintain respiration.

My sister Sandy is my health care agent, which means at some level she knows the first call made by doctors in any medical emergency will be to her phone. Knowing it and then receiving the call are two different things. She was an hour away from me when her phone rang that early morning in May and told the doctors to keep me alive until she could get there.

I spent the next four days in a coma in the Intensive Care Unit. My family members who had already spent too many hours in hospital rooms watching loved ones the prior year now spent hours at my bedside. Sandy had to make several difficult decisions.

Would she let them ventilate me to provide a stable airway?

Would she allow a nasogastric feeding tube to provide nutrition?

Would she agree to a central line in my neck to administer medication?

Sandy knew my wishes about all of those questions and acted exactly as I would have wanted her to. However, knowing my wishes did not make it easier for anyone to watch me lying in a bed with tubes and hoses attached to me in various places.

I woke from my coma late Sunday to see my beautiful sisters smiling down at me. They rushed to tell me not to talk, to explain the ventilator. I immediately indicated I wanted to write a message. We spent the next few hours attempting to communicate using a crude alphabet board. I was extubated the following day and probably haven’t stopped talking since.

The next day, I made the physical therapy staff assess me for transferring out of bed. I also begged the nurses to remove the foley catheter from my bladder. The central line in my neck came out the following day and on Thursday, a week after my original discharge date, I went home.

During my coma, my family consistently had to encourage medical staff to ignore the empty wheelchair in the corner and treat me as the otherwise healthy, active, independent woman I am. They would tell the doctors and nurses about my life, my accomplishments and my abilities. They were able to articulate my preferred positions, and repeatedly reminded the staff about the muscle contractures which make it impossible for me to lie comfortably flat on my back with my legs extended.

I am alive today because those I trust knew how to advocate for me when I was unable to speak for myself. Yes, medical treatment and antibiotics helped. But I know if I had not had a team of loved ones intervening and making certain my wishes were followed, things may have ended differently.

Discussions about disability and end of life can be uncomfortable. They remind us of our fragility and mortality. No one wants to think about losing their abilities. However, life happens to everyone and none of us can predict when we will find ourselves on a hospital gurney, staring at the ceiling and hoping someone will come to our aid.

Right now, while you are healthy and independent, you have power. You can control who will get that call, who will be tasked with making those decisions. Exercise your power now. Start the conversation.

Because when you are lying on that gurney, it’s too late.

Before You Go…

Most young people don’t think about their own mortality. I can’t quote any scientific research to support my theory but my informal observations lead me to believe many people wait until a major life event (marriage, birth of a child, serious illness) or an emergency situation to have difficult discussions about disability or death.

I learned at a young age how important it is to make your end of life wishes known to your loved ones BEFORE you are facing imminent death. Having spent the first decade of my professional life working in nursing homes, I regularly interacted with people who had not had prior conversations about end of life care for mom, dad or themselves. I wrote my first advanced directives at age twenty-four. I completed a health care proxy the following year, and advocated for my parents and those I love to complete their own paperwork.

My aging parents are still living in the house they have owned for more than fifty years. Twelve years ago my five sisters and I honored them by coordinating a surprise 50th wedding anniversary party. There were many heated discussions and emails between the six of us about the menu and dessert list for this wonderful party. After the event, I handed my parents the health care proxy forms and told them I would prefer not to argue with my sisters about something other than a menu. I may have said something snippy, along the lines of, “I don’t care who you pick, but you must pick someone to act as your proxy in case something ever happens to you.” Two years later, when they were both injured in a car crash, we knew their wishes because we had those difficult discussions.

Making your medical wishes known is important, but how many of you have given any thought to what happens to your digital life after your physical life ends? Do you have a file of all your online or social media accounts and your passwords? Do you use a password manager to remember all your passwords so you don’t have to?

I will admit I have given very little thought to this but Thursday I read an article in my local paper describing how you can now appoint someone to manage your Facebook account when you die. I don’t know that I want my Facebook account – or any other account – to be maintained after I die. I have friends who have passed away and someone (friends? family?) must be managing their accounts because several of them are still out there in the virtual world. Should you want to explore your Facebook options, go to your “Security” page under “Settings” and look down at the bottom options for Legacy Contact. You can select to have your account automatically deleted after your death, or you can memorialize your account. Facebook describes memorialized accounts as “…a place for friends and family to gather and share memories after a person has passed away.”

At this point in my life, I think I want my social media presence to end when my life here on earth ends. My Facebook account is mine and I don’t think I want anyone close to me to have to face the burden of managing my page when I am no longer alive to manage it myself. But I can understand how sharing memories or tributes might be helpful to those coping with loss. Funeral parlors and newspaper obituary columns have been offering “legacy pages” for years on their websites. When my sister and brother-in-law died, the messages from friends, relatives, colleagues and former students were moving and heartfelt.

Since I read the article, I spent some time making notes and discovered between work and personal life, I have over twenty online accounts: Facebook; Twitter; LinkedIn; WordPress; SurveyMonkey; MailChimp; Amazon; Basecamp and many more! I knew I had a digital footprint but I never realized how big it was or thought about what would happen should I no longer be around to manage it.

So, I will be spending time this weekend updating my information, learning about password managers, and contacting those who have agreed to act on my behalf should I become incapacitated. They did well two years ago during a health crisis, and I’m confident they will manage my virtual legacy just as competently.