The phone rang again almost a month to the day later. This call was from the administrator of Mom’s apartment building; a smug young guy with “I told you so” dripping from his voice. Mom had fallen again, in the exact same spot, doing the exact same thing despite my admonitions that she not go near there again. She was on her way to the ER.
This time there wasn’t much of a wait to hear that things were much worse. She had broken her right hip badly. As I spoke with the ER doc, I felt panic rising. Avoiding surgery was not an option – unless we were content that she would never walk again. When I finally spoke with her, she was confused and obviously in pain. The surgery was scheduled for the following morning.
We spoke early in the morning and Mom was calmer although still very uncomfortable. She had remained stalwart and refused anything stronger than Tylenol. She understood the implications of a hip replacement – she would be going to a rehabilitation facility after – and with COVID-19 running amok in Arizona. We were both anxious and trying hard to be brave.
I waited. Two hours. Three hours. Four. A physical therapist called to try to arrange a home therapy visit for her shoulder – nope. Some four and a half hours later, her surgeon called me. The surgery had not gone well, the trochanter cracked, complete hip replacement, she lost a full liter of blood, and they were considering transfusion. She would spend three days in ICU as they worked to regulate her heart rate. I worried. About whether she would walk. About possible cognitive loss. About death.
The day after surgery she was pissed that they didn’t have TV in the ICU so she was missing her football. She gave in to Tramadol, the lowest dose narcotic you can take. She hated the food.
No matter how up to date we are on the statistics of how our life might end, we never truly believe it will happen to us. About 36 million older adults fall each year—resulting in more than 32,000 deaths. Each year, about 3 million older adults are treated in emergency departments for a fall injury. One out of every five falls causes an injury, such as broken bones or a head injury according to the CDC. But those things happen to other people.
My Mom is 84 and lives independently in Mesa, AZ, with two yappy geriatric dogs. I tried to get her to live closer to me nearly a decade ago, and she lived briefly in Wenatchee which is about a 3 hour drive but on the eastern (aka drier) side of Washington state. But her nomad leanings kicked in after a year and off she went to upstate New York for a spell, then to Florida, and finally she landed in the desert. The Mesa arrangement was a smallish retirement apartment, with a meal a day and some common areas for games and dining. It became a bit of an isolation cell with the onset of COVID-19, with her daily meal brought to her room and me managing regularly groceries and basics delivered from Walmart and Amazon.
Then I got the phone call.
My Mom had fallen while trying to pick up after her dog and had to be taken by ambulance to the ER. Of course I didn’t know which ER so I had to wait. And wait. About 5 hours later she called me from home, obviously in pain. X-rays had confirmed a broken shoulder – we wouldn’t know how bad it was until she saw an orthopedist at the end of the week. In the meantime my stoic mother would manage her discomfort with Tylenol and a sling; she had refused any narcotic.
The orthopedic surgeon confirmed the diagnosis with an awful caveat – the shoulder was misaligned. After several days of round robin phone calls – me and the doc, me and my mom, doc and mom ad nauseum – it was decided that due to her age and other health issues she was a poor candidate for shoulder replacement. The surgeon felt that there was little to be gained. My Mom would most likely never raise her left arm above her shoulder again. The blessing was that she is right hand dominant. She would manage.
She was home and gearing up to start physical therapy.
Physicians Orders for Life Sustaining Treatment. Does any other profession love the acronym more than the medical profession? I think not. They have a batch of letters for just about any occasion. This particular batch is an important one if you are of a certain age or have a diagnosis that could mean something unexpected could happen. By unexpected, I mean in a life threatening sense. In the “I might just have a potentially fatal event at any time,” sense. Say a heart attack or seizure kind of event. To be honest, with COVID-19, this feels like all of us.
A POLST is exactly what it says it is. It is a signed document – signed by a doctor – that directs emergency care in a situation where the person receiving that care is unable to direct it themselves. It’s aimed at first responders; the people who show up when you or your partner dials 911. Or the paramedics who show up at the restaurant when you keel over into your bouillabaisse. It directs these folks with your wishes regarding CPR and other emergency medical interventions and it directs them as a medical order.
This form is NOT an advanced directive and is not intended to take the place of an advanced directive in any way. It is supplemental to an advanced directive and as such, care must be taken that a POLST does not conflict with an existing AD. Everyone should have an advanced directive for health care in place. Not everyone needs a POLST. If you’re young and in good health – totally unnecessary. But if you have a chronic condition that could be life threatening or are simply in the age bracket that is the epitome of Humpty Dumpty (fine on the outside but more fragile than you look) a POLST can prevent a lot of pain.
You’ll hear me say this again and again. You can have everything in order and still not go out how you would like. Every i dotted and every t crossed. ALLL the paperwork finished, filed, and dispersed to parties in question. You’d like to punch your ticket for “died in your own bed, surrounded by loved ones and magnolias, and in a comfortable opiate haze.” But then you keel over into that bouillabaisse, and those paramedics show up and defibrillate, intubate, and break a bunch of ribs in the process. Next thing you know you’re a pincushion in an ICU, no visitors cuz COVID, with some surgeon considering opening you up to fix that punctured lung despite a 1% chance you’ll survive.
I am trying to scare you here. It’s part of you making informed decisions. A POLST does not guarantee that you’ll get your magnolia and opiate send off either. BUT it does mean you have a little more control than if you didn’t get a doctor to sign an order saying “comfort measures only.” Your POLST will reflect YOUR wishes, and the understanding that your doctor is informed of them. Done correctly, posted and carried correctly – it is the best way to ensure that your wishes come first.
Editorial note: Not every state has a POLST. Some call it something else, some have a limited form, some have nothing like it. Lucky Washingtonians DO have this option.
I’m guessing that you don’t have a death plan. Jeez, even saying ‘death plan’ is creepy and laced with undertones of self harm. But since the end of life is an inevitability, why the heck shouldn’t we have a plan for it? I mean I have a plan for retirement, a plan for the weekend, and a plan for when I meet Hugh Jackman – none of which are guaranteed. Death is guaranteed. You should have a plan.
So what exactly is a death plan? It starts with getting all your paperwork in order. Step One is a nice fresh Advanced Directive for Health Care complete with an assigned Heath Care agent. This is the absolute minimum preparation that you can make to assure that you have any control at all in the end of your life. You need this completed, recently, and you need a copy somewhere where it can be found easily should you not be able to access it. Start with this and start a folder.
Next absolutely necessary document is a Disposition Authorization. This is a simple but necessary document if you want things to go smoothly. I’m assuming here that you have decided what you would prefer with regards to your remains. This form gives permission for cremation, burial, or composition; your folder should also contain a Designated Agent for Funeral Arrangements which gives someone permission to get your wishes enacted. All of this legal hoohah is exactly why it needs to be done in advance. Otherwise you’re leaving a mess for your loved ones just when they need it least.
Then we come to the stuff we might not want to think about. Like a funeral service. Or obituary. Nothing uncomfortable at all about thinking about that stuff. But back to our original thought – the end is inevitable. Do you want to leave your family to do alllll the things? That’s fine. Funerals are for the living and I think families should feel empowered to do whatever they need to grieve and find some closure. That being said a little input from you might make that easier… even if it’s just to say do what you like.
These are the foundations of a comprehensive death plan. There’s lots more that can go in this folder and I’ll expand on this theme from time to time. But what I’d like you to do, in this time of a global pandemic, is start thinking about these hard things. Because the problem is always that you think you have time. And there is no guarantee on that.
This morning my very dearest friend in the world called to tell me that her sister, Sue, had died. It was not a surprise; she was yet another victim of COVID-19. To date 120 million souls have died from this modern plague. The SARS-CoV-2 virus is a killer to be sure but it is so much more than that here in the United States. This virus underlines with a red magic marker the many ways that our health care system, the most expensive in the world, fails us at the end of life.
The modern, for profit, hospital is rarely designed for the dying. My regional hospital is pretty typical; trauma patients are airlifted to a regional trauma center and anyone else on the edge of life is shuttled off to the nearest skilled nursing facility in the blink of an eye. The insurance industry has a great deal to do with those kinds of decisions, that and financial bottom lines. Although 72% of hospitals in the United States with 50 or more beds have a palliative care program (read comfort care only,) these are mostly large nonprofit hospitals in big cities.
This brings us to yet another layer in this particularly grim scenario. The physicians in acute care facilities are ill prepared for the tsunami of dying patients that COVID brings their way. Not one doctor that was treating Sue had a clue how to keep her comfortable with a ruptured bowel (yep, COVID can do that.) They wanted to do surgery, knowing full well that she wouldn’t survive, but they didn’t know how to dose pain medication for a dying woman. Sue was eventually treated appropriately, but only because my friend is a Hospice nurse. SHE told the doctors how to prescribe the necessary medications.
I guess I don’t have to remind anyone that this is 2020, a year that will live in infamy in our imaginations for a lifetime. There is no reason – NO REASON – for anyone to die alone and in pain in a supposedly well off and modern nation such as the US. Yet that is exactly what is happening, right here, right now. It’s time to address this. This website and this blog are my ongoing contributions to furthering the education of Americans on how we die and how we can do it better. We. Can. Do. Better.
I was finally scheduled to have carpel tunnel release surgery on March 19th, having endured literally years of numbness and pain. On March 15th, Governor Inslee shut the state down to try to slow the spread of COVID-19. CTR is considered elective surgery and all elective procedures were now on hold. Into lockdown we all went, limiting contact with the world outside our homes, watching Netflix and snacking to pass the time. We watched with increasing horror the carnage in New York City and a few weeks and my town was a quiet place, surreal with the lack of traffic or construction noise.
Fast forward to June 27th. My surgery is scheduled for the 30th and in compliance with my doctors instructions, I drive in ordinary traffic to a drive through testing site for a mandatory COVID test. The freeway was bustling, and people are on the streets. The third car in line, I note that the gal in scrubs is chatting – maskless – with the occupants of the car in front of me. She waves me forward, asks if I have an appointment and then hands me a ziplock bag. This is my test.
The second tent takes things a bit more seriously, in full PPE. Standing at a distance I’m instructed to check the labeling (yes, it’s mine) then remove the swab from both the bag and it’s paper wrapping. Insert in nostril until you feel resistance, make four circles around in there, insert in other nostril, four circles. Put the swab tip first into the labeled tube of liquid, break off the handle, close the lid, put everything back in the ziplock bag. Perfectly contactless.
My stomach is in my throat. Suddenly the word ‘pandemic’ is scary and real and I feel very, very mortal. Even though I’ve watched the news, even though I personally know at least 3 people who have died of COVID and maybe a 4th, even though I believe in science and am fascinated by all things viral in all their adaptive, simple glory it didn’t get real until today.
Here’s the thing. I’m not afraid to die. I choose to work with people who are dying because I have looked with steely eyes at my own mortality and made peace with the inevitability of it all. But I am afraid of pain. Like most of us, I am afraid of a painful, drawn out and protracted death. I am afraid of dying alone. And COVID-19 guarantees all of that. This virus isn’t just deadly, it is a horrible death personified. No advanced directive in the world can protect you from the death COVID serves up and our health care system is not prepared to even try. So today I feel fear. But believe me, day after that little elective surgery, I’m about to get pissed.
I can accept my sister’s death. After all she was in her eighties and had plenty of physical ills any one of which was potentially fatal. But in the end she died of COVID-19 and what I cannot accept is the treatment that she received and failed to receive in the 48 hours before her death – adequate pain control and the comfort of family by her side as she approached the end.
Sue was transferred from a skilled nursing facility to an acute care hospital on June 14th; she had been exposed to COVID at the facility and was now symptomatic. I hadn’t been allowed to visit my sister since late February due to the virus, now that she had it I was told I could not see her at the hospital because of CDC guidelines. I searched pretty diligently and found no evidence of any such guideline on the CDC website. My sister may be dying but until she was deemed “critical” I would not be allowed to see her. In other words, until she was unconscious and unresponsive, I couldn’t visit.
On the morning of the 19th, Sue developed a new symptom – abdominal pain. A CAT scan was ordered but when I arrived at the hospital in the afternoon, it still hadn’t been done. I was informed that it couldn’t be done because the cleaning protocol on the machine would take hours and it might be needed for trauma! Apparently in modern hospitals the concept of using plastic sheeting or plain ol’ Saran wrap is innovative. The scan was finally done at 8 PM. This is where bad went to the seventh level of hell.
The scan revealed two perforations of the colon and an abscess (yes, COVID does a number on the bowel.) The surgeon was suggesting an exploratory laparotomy to clean out the abscess and removal of the colon requiring an ileostomy. Now let me remind you that Sue was 82 years old, obese, had a history of emphysema, COPD, congestive heart failure, atrial fibrillation, diabetes, and she’s got COVID. She also had a POLST – Physicians Order for Life Sustaining Treatment – that limited life support such as a ventilator to 3 days only.
Why would a surgeon even suggest surgery at this point? As an RN with a background in ICU and Hospice, I knew that she would never survive. In fact when I backed him to the wall, the surgeon as much as admitted that Sue had about a 1% chance of survival. I refused the procedure as her agent, told him I wanted her kept comfortable, and signed a Do Not Resuscitate order.
On the 20th, I was finally allowed to visit my dying sister. Fifty years of nursing and ten years in Hospice did not prepare me for what I found. Sue was in agony – in her words “11 on a scale of 1 to 10.” She told me she had been calling for me all night. She had no IV in place for medications and was only receiving 1 mg of morphine every 4 hours IM. I knew this was grossly inadequate and my sister was dying in unbearable pain. At the end of 20 minutes trying to comfort Sue I was told my visit was over. When I declined to leave, I was informed that I could no longer visit and security would be escorting me out.
I demanded to speak with a doctor and was granted a hallway consultation. Words cannot convey my emotions – shock, horror, anger and disbelief. Why was she receiving so little pain medication? – well, I failed to use the term “comfort and care only” and without THAT EXACT PHRASE, his hands were tied. Why wasn’t she given the drug intravenously to maximize its effectiveness? – well, staff was unable to start an IV and it never occurred to anyone to maybe call an anesthesiologist or radiology tech to help. Why not use oral morphine to supplement? – well, the pharmacy doesn’t stock it. Why was there no one to guide the pain management? – well, Palliative Care is a contract service and not available on the weekends.
My sister is gone. Thankfully, because I am a nurse and knew the right way to advocate, you can read that as threaten if you will, her last few hours were spent in a peaceful, drug induced haze. But I cannot stop thinking of how many families are enduring this nightmare as I speak. How many terrified people are dying in pain without their love ones at their side? AND WHY? Why are hospitals denying families the right to see patients with COVID? Who does it protect? The community? Right now the “community” is bitching about wearing masks and whining about getting a haircut. Protocols can be put in place. Self isolation is, I know as I’m doing it, not that hard.
Acute care hospitals are not prepared for the dying. I urge everyone to write to your regional hospital and demand that they up their game. Demand administrators to procure end of life medications and prepare their staff to use them. No one in this modern era should have to die in pain.