A Mother's love

This Valentine's I am remembering Megan and the incredible love she had for her daughter.

When I first met Megan I was extremely skeptical about her ability to care for her newly born daughter Lilly.  Megan, 17 and Todd, her boyfriend, also 17 had just brought Lily home from the hospital for the first time.  They had no home or apartment of their own, so they were "crashing" with friends.  I entered the small apartment just hours after they had been discharged. Four other people were already living in the apartment, which was scantly furnished, yet cluttered and untidy. 

My primary interest was in 4 week old Lily, so I squatted down on the floor to meet Lily, as they had no baby furniture/equipment to put her in.  She was bundled in blankets on the floor, with an oxygen tube taped to her cheek.  Lily had several issues; besides being born with a congenital brain malformation, causing certain parts of her brain not to form, she also was born with a cleft lip and palate.  The combination of the brain malformations and the cleft left her with basically a large whole for a mouth and nose and lopsided eyes which she could not see out of.  All her nutrition was through a feeding tube.  Medically she had severe seizures on a sometimes daily basis, and didn't enjoy being touched and would scream out when being held. 

The reason I was seeing Lily was that she had been given a prognosis of only weeks to live, and I distinctly remember thinking that I hoped, for Megan and Todd's sake this was true.  They were just too overwhelmed.  I left that first night thinking a lot about Megan and Todd, both high school drop outs who had enjoyed playing video games during the day and partying at night. They had unexpectedly become pregnant and decided to do the "right" thing and keep the baby.  Now they were being expected to do something super human, and care for a dying child who had a distorted face and didn't like to be cuddled or touched.

Todd didn't handle it long, and left after about a month at home.  Lily, surprisingly thrived in Megan's care. At my monthly visits, I watched Megan work like a pro, getting the tube feeds ready, administering seizure medications, etc.  Even when she'd been up all night due to Lily's seizures, she spoke to Lily as only a mother could; gently, lovingly, and sweet.  The two of them had moved from one friends apartment to another.  Although different locations their "home" always looked about the same - always other teenagers at my visits, hanging out playing video games, always evidence of fast food meals, cigarettes and alcohol. But also just as consistent was Megan paying attention to Lily, asking about milestones and telling about little victories in Lily's head strength and cognition. I could tell when Megan looked at Lily she only saw beauty and possibility. 

Lily lived just past her 1st birthday.... Her death was tragic, not because she suffered or  had pain as she died, but because over the course of the year, Megan had fallen head over heals in love with Lily.  The immature teenager I first met had been transformed by love to become a wise responsible woman.  Megan embodied the kind of love that "always protects, always trusts, always hopes, always perseveres."  

Dilemmas with pain

I love being able to treat people’s pain without worrying too much about addiction.  This benefit of palliative medicine is certainly important especially in the pain phobic, escapist society we live in.  My patients usually won’t live long enough and/or have such very real pathology (i.e. cancer) that misuse of medications is quite low.

This, however, doesn't account for patients who have very real addictions and then unfortunately find themselves with a terminal diagnosis on hospice. Suddenly the ease of treating someone’s pain morphs into quite a challenging dilemma.

For instance, one of the tenants of palliative care is to relieve suffering. Thus, ready access to opioids is essential.  A regular doctor would have qualms about filling prescriptions early for pain medications or escalating doses rapidly.  But in hospice, if a patient is dying, sometimes doses easily escalate in an attempt to provide comfort and relief of suffering. 

What to do then, when you suspect inappropriate use?  Does someone with a past or even present addiction not “deserve” medications for pain? Can I refuse? Should I set limits? Refusal certainly goes against the grain of a specialty tasked with providing excellent pain control!

We certainly don’t interfere with addictions to other substances – On hospice, smokers generally keep smoking and alcoholics keep drinking…in fact it’s expected that in the last weeks of life people aren't going to change life long habits.  Is it different then for other substances?

Going deeper philosophically I could even argue that the misuse of opioids generally starts from the ability of those substances to numb an incredible emotional pain… it’s an escape, a postponement of dealing with the hurt, etc.  The qualm then is that this desire to escape can happen in very average people who are suddenly struck with a terminal diagnosis.  It isn't unusual to treat a 40 year old woman with breast cancer who has what we coin “existential” pain because she can’t deal with leaving her 3 small children. This type of patient often has a pattern of escalating doses of morphine to escape that reality.  Is that misuse of opioids? Or is it her way of dealing with dying? I don’t know of any physician who would refuse her medications…. So why then if the escape from pain started earlier and someone got labeled an addict, do we suddenly have issues with treating their long standing existential pain?

It’s certainly a topic worth exploring and one I admit not knowing all the answers for.  I suppose for now, I will continue to treat all pain, being aware of addictions and escapism and using the safest medications available, in an attempt to minimize risk of harm

Katie's Choice

I've seen prolonged dying many times. Usually there is a good explanation, the individual is young or has kids they don't want to leave.  Sometimes it's an unresolved conflict or an irrational fear of dying. Regardless of the reason, if a reason, the process becomes extremely tough on the family.

One of the tougher ones for me to explain happened in a young woman I cared for recently named Katie.  Although there were young kids involved, they had been removed from the family. Those by Katie's bedside each day were her mother, brother's and sisters. Katie had fought cancer for several years, far outliving her original prognosis.

While I had explained initially to family I supposed this would be long and hard - They and I weren't prepared for the 4 weeks without any food or water that Katie laid in our hospice bed.  She was incredibly thin, bones outlining her face and jaw, eyes sunken. She was rarely awake, but when so, in terrible agony, not from physical pain but internal fighting and issues never dealt with.

Her family was devout, cradling her in bed, attending to any sigh or moan, never leaving her side. Each morning they looked at me with strained eyes and weary souls hoping I would tell them she would die that day.  But each day Katie's un-readiness allowed her body to somehow exist past the point of human understanding.

Her final week she had stopped making any urine. Her blood pressure, barely palpable stayed around 50/30. Her toes black from no circulation, and the blood pooling we normally see after death called liver mortis was present despite the fact that she hadn't actually died.  She was no longer able to move or talk or moan. It was as if her physical body began it's decomposition in lieu of her utter refusal to actually die.

The family became more and more erratic in their exhaustion. Telling her often that it was okay for her to die. In one unbelievable moment, as this living corpse lay with family in tears surrounding her, they began to angrily plead, "Katie, you must go, let go... it's okay, it's time to die...we can't take this any more, won't you please just die!" It was in those moments that a defiantly strong voice suddenly echoed gutturally from the skeletal figure shaking the room to silence, "NO!!!!"

Don't tell me that Katie's prolonged dying wasn't in her control. I am not sure how to envision her intangible will, but it was physically keeping her "here".  In medicine we can't measure will or fight or some one's "spirit" but one thing I've come to learn, it can play a huge role in the way we leave this earth.

While her death was prolonged and many would say full of suffering, I must respect that it truly was Katie's choice. And had we interfered medically, shortening her time, like so many had pleaded for us to do, ultimately we would have disrespected that choice. Katie of course finally did die, likely against her will, a few days after her outburst.

Night Visitor

Blake's mom had been sick since he was born. She was diagnosed with lung cancer right as he came into the world. She went through very aggressive therapy and unfortunately began having strokes as well. Each stroke seemed to take part of her person-hood. Her husband and parents would work tirelessly to help her regain function to undergo more chemo, and then a new stroke would occur.

When I finally met Blake's mom, she had just had her most debilitating stroke. Unable to communicate reliably, her arms and legs were contracted, so that any sips or bites were hand fed to her. She often had a blank stare leaving me to wonder if she was still in there, but the family was determined to keep her living for Blake, her 4 year old son.

She was at our hospice house for many weeks, her husband with her at night, her mom with her in the day.

This particular night Blake had spent time during the day visiting his mom, and was at home with his grandmother. Ready for their nightly routine Blake's grandmother began looking for him, to have him call the hospice house to say goodnight to his Mom.

"Blake" she called, "time to call your mom", repeating this several minutes before Blake finally reappeared. "Blake" she then scolded, "why didn't you coming when I called, you love calling your mom." Blake grinned and told his grandmother "No", leaving her aghast at his indolence.

He then explained, "I don't need to call tonight, because she came to see me, she told me goodnight and that she loves me"

The grandmother was now quite alarmed, calling the hospice house. Her fears realized as she learned her daughter had indeed died just a bit earlier, the husband having not even had time to call yet.

Another unexplainable moment in the world of Hospice and Palliative Care

Failed Admission

When I walked into Bill's room all I knew was that he had a type of bone cancer diagnosed 3 years ago. He was in his 70's and was not at the end of his disease by any means. Just based on his cancer and functional status, he probably had another year or so to go.

Arriving at our hospice house, I assumed he must be coming for pain control, since his type of cancer is notorious for pain.

He greeted me cheerfully when I entered, introducing me to his wife and 2 children who were visiting from out of state. I noticed the daughter's hand full of crumpled tissues, eyes still moist from tears. They seemed close, hovering near Bill who seemed surprisingly calm and symptom free to have been rushed into the hospice house.

When I finally came around to the, "and what brings you to the hospice house" question, Bill stated in a matter of fact way, "I am getting weaker now, it's harder to take care of myself and I just don't feel I am contributing any longer to society, so I'm hoping you can give me something to help this go quicker"

These types of statements come up from time to time, so I just did as usual, and addressed it openly, naming his suggestion. "Well, Bill, you know we can support any symptoms you have here, pain or anxiety, etc, but I cannot give you anything to hasten your death, it's illegal actually" At this point normally people say they understand and were just joking...

However, this is when the body language changed in the room. The daughter quipped incredulously, "You can't?" while Bill asked, "Well, where in town can I go for that?" I felt everyone bristle with shock, which confused me that they were this serious.

"I am sorry, but again, there is no where in the United States that a doctor can actually administer a medication to make you die, that is euthanasia and it is illegal" I explained.

Then his son blew me away when he addressed his father, "Well Dad, do you just want to go home then? It seems that the reason we came here, to help you die, they won't do...so want to leave?"

I tried to look as if this conversation was normal, however, realizing that this entire family had come in, even flown in from out of state to have some hollywood moment of saying goodbye while I lethally injected their loved one was startling.

He did leave the house, not just because he wanted, but I couldn't justify him staying - there were no symptoms of pain, anxiety, dyspnea or even emotional pain. He was logically just done and actually didn't require any medication while he was with us transitioning back home.

So my first admission for desired euthanasia, was a failed admission. Thankfully, failed

A story for Mother's Day

The bond between mothers and kids can be strong, but this Mother's Day I'm thinking of a particular bond I witnessed that was excessive.

The patient was nearing 100, and her only son accompanied her to our inpatient facility. I've come to expect tears and displays of emotion in my line of work, so wasn't at first concerned with the overt tears that were constantly adorning the son's face.

But then I began to hear their story. Nearing 70 himself, the son had spent only 2 days apart from his mother in his entire life. They had never vacationed or taken trips, they just stayed, all those years, in the house... together. Well, except for the time in his 30's that he became so depressed with the thought that his mother could die, that he had to spend some time in a hospital on medication.

He'd say things like, "The sound of her breath is what gets me up in the morning, and what lulls me to sleep at night." He was constantly by her bed, holding her hand- even as he and she slept.

I've heard people say before, "I don't know how I'll live when xxx dies". But in this case, I believed it. I'm not sure what else this man had in his life besides his mother? Over the years he'd become enmeshed, and as she lay dying, he seemed to be dying as well.

So this mother's day, be reminded that there may be such a thing as too much....

Suffering

I think one of the harder things to do is watch someone suffer. I'm not sure if it's because it causes us to suffer ourselves, or if it just brings up fears of ourselves being in that situation.

Recently I had a patient with a complicated cancer. She was at our hospice house for an extended time, but clearly began to lose her fight. In those rough days of her body's transition to dying, she had a lot of symptoms. She was nauseated constantly, with dry heaves frequently, and had pain with any type of movement. Despite all the pills, liquids or IV's that I suggested for her, she wanted nothing.

Nurses began to fret and suggest maybe I could do something about this refusal of medications. "She's just lying in there, suffering..." Suggestions ranged from placing a pain patch, to convincing her of the necessity for a subcutaneous site so that medications could be given, despite her refusal.

While the intentions were good, I had to step back a minute.

Who am I to decide for someone the way they should die? While most would think suffering was indicative of a 'bad' death, the reality is for some, this is exactly the way they want to go. The number one priority for me as a palliative care physician is not to treat someone the way I want to be treated, or the way YOU want them to be treated, but to treat them the way THEY want to be treated.

Although very difficult, I respected my patient enough to not cajole, convince, persuade or trick her into pain medicine. With every frown, moan or grimace I winced, but in allowing her to do things her way, I witnessed an amazing ability she had to stay present, in mind and spirit, till the last moments of her life.

She died smiling. Her journey may not have been my choice, but it needed to be hers.