You get to say when to stop your medical treatments

As we age, illness, frailty and end-of-life often creep up on us.  For most of us, there is not a big diagnosis of cancer or a heart attack.  It’s often just old parts, slowly breaking down.  The medical system keeps fixing those parts because there is no clear line of where or when to call it a day and let take nature take its course.  These ongoing treatments are called ‘medical creep’ and they can happen even if you have a clear advance directive or medical orders that call for no resuscitation or critical care interventions.

“Painful, futile treatment continues to this day, particularly with elderly patients who often are not informed of the difference between palliative care, designed to minimize pain while trying to preserve quality of life at the end, and aggressive treatment more designed to prolong life at any cost, using such methods as surgery or chemotherapy. Often, they are not informed about the benefits of letting some conditions run their course.

Here in [North] America, there is a deeply held belief that advances in medicine will eventually conquer or cure the chronic scourges of cancer, dementia, heart disease, lung disease and diabetes. This notion leads many elderly patients to seek aggressive treatment not only to spare their loved one’s grief but because they hope (and expect) to be cured, if only they hold on just a little longer.” ~The Washington Post

Our loved ones are often our champions and cheerleaders as this creep continues on.  I remember my father saying many times over the last few of his 91 years, “I’m tired.  I’m done.”  My mom said, over and over, “Come on, Tom.  It’s just been a tough day (week or month).  You’ll feel better soon.”  Out of ear shot she would say to me, “He’s just a little depressed.  He’ll be fine.”  She was his caregiver, cheerleader and champion and he likely would have died 20 years before, if not for her.  But it was a role that she simply couldn’t let go of, even when she knew he had passed his ‘best-before’ date, when every day was a chore, and he was no longer enjoying life.

Over the last 10 years of his life he’d had a quadruple bypass and two valve replacements; five strokes, all relatively minor, but they had added up; but the simplest was the worst – and would eventually cause his death – bladder infections (also known as UTIs or urinary tract infections) caused by the superbug MRSA.  Each time he would recover to a large extent, but it took longer, and his health baseline was never as high as before the most recent illness.  The last two years of his life were a series of longer and more frequent hospitalizations that left both of my parents worn out.

I often wondered what we could have done differently – and when – as the medical creep kept along its path.  If I knew then, what I know now, I would have sat down with him privately, and delved a lot deeper into when he said he was worn out and done.  “What does that mean for you, Dad?  You have choices.  When you get another active bladder infection, do you want to leave it untreated?  If something else happens – another heart attack or stroke – do you just want the doctors to leave you alone?  Would you want to die, here at home, or do you want to go to the hospital?”  And only after I’d had these discussions with him, would I have called in my mom, to have her truly hear what he’d said.  We would have made a plan.

When illness does become critical, advance care planning and goals of care discussions can ensure that care delivery reflects patient and family preferences by detailing their wishes, including those who may not want aggressive care at the end of life. ~ Care in Canadian ICUs; August 2016. Canadian Institute for Health Information

Beth* is an 86-year-old who I am actively involved with as a healthcare navigator.  As I write this, she is awaiting a bed in hospice.   It has been a month-long battle (I don’t use that word lightly) to stop active treatments and allow her to die. (I’ve had discussions with Beth and her family about MAiD but it is not an option she wants to consider.)

The last few years, especially the last one, have been tough for Beth.  She had a serious bout of pneumonia last fall that she had a hard time shaking, frequent and severe urinary tract infections (UTIs), and then a few months ago, a sinus infection that caused a brain infection.  With every infection she became increasingly frail and she never completely bounced back.

She lived independently up until a year ago; home care was brought in after the pneumonia, and then, in April, she went into long-term care after her brain infection.  During all of this she remained clear-thinking and fully capable of making her own decisions. Her supportive family were able to step in to help her with her daily living and medical appointments.  There were some very good moments including visits with a new great-granddaughter and dinners out with family.  In fact, being in long-term care gave her a better quality of life and her family thought she might have turned a positive health corner.

It should to be noted that during the spring hospitalization, Advance Care Planning had been completed: a Representation Agreement (a BC health proxy document) was put in place;  doctor’s orders for Medical Orders of Scope of Treatment (MOST) were at a Level 3: “No CPR.  No Critical Care unit transfer.  Transfer to hospital to treat conditions that are readily reversible.”  She had long discussions with her family about her desire for no heroics.  All of that was helpful, but it didn’t help in her case with ‘medical creep.’

Then, last month, her UTI came back with a vengeance.  She became septic (bacteria and fungus had entered her blood stream) and she needed massive doses of intravenous (IV) and oral antibiotics and anti-fungal medications that caused constant nausea.  A CT scan showed a walnut-sized kidney stone blocking one of her ureters (tube from kidney to bladder).  Surgeons tried twice to put a stent (a thin tube placed into the kidney that bypasses the obstruction) but she just got sicker, so a tube that drained directly from her kidney to an outside bag was inserted.  The kidney stone was so large, that a long, invasive surgery was the only option to remove it.

Bloodwork and ECG showed that at some point during all of this, she’d had a heart attack and she was in congestive heart failure.  In order to have the kidney stone removed, she would need her heart to be stronger.  Cardiology was called in and they advised an angiogram (also known as a heart catheterization, where a wire and then dye are injected into the heart looking for blockages) and the possibility of inserting a stent into blocked arties to improve blood flow.

With her fragile heart, the angiogram had significant risks of further heart damage; if that went well, she would need four to six weeks recovery before the surgery to have the stone removed; and, if her recovery went well, she would need ongoing antibiotics until the stone was surgically removed in four to six weeks.  The surgery would be at least three hours long and chances of a complication were high.  There were a lot of ‘if this part goes well, then…’ but there were also a lot of risks that at any point several things would not go well.

And, there, Beth and her family found their line – the place where they didn’t want to move forward – and Beth wanted care withdrawn.

You’d think that would have been the end of the discussion, but it took days of team-family meetings about whether her decision was informed, what her death would look like, and where she would die for maximum comfort support.  Beth has not been a part of most of the medical discussions: she was clear about she wanted and asked her family to be her advocates.

Dying is rarely easy.  There are tough decisions every step of the way.  It is mentally and physically exhausting for all involved.  But Beth’s family have risen to the challenge and they have gone above and beyond to say, “Beth is tired.  She’s done,” and will give their mother the gift of a good death.

If you need one of our navigators to help you have these discussions with your loved ones or healthcare team, please contact us.