There is a difference between being told you have a terminal illness and being told you’re dying. And between these two things is a big, gaping hole.
I want to talk about that hole. A year ago my best friend was told to get her affairs in order. It was quite a blow. As I sat with her in the oncologist’s office I didn’t know what to say. I had a million questions. So did she. But neither of us had the strength or the courage to put our fears into words…
How long did she have?
That was the question we danced around. That was the question the doctor didn’t volunteer an answer. So we left the oncologist’s office, went back to my place, opened a bottle of wine, and cried.
That question has haunted me every day for the past year, and was finally answered a week ago. My best friend died last Sunday, February 20th.
I’m not going to write on my personal relationship with the best friend ever. It’s just too raw, and I could fill pages on our 31 year friendship. But I do want to write about the experience, about the gaping hole in our health system.
As a side note… if anyone ever throws the term “death panel” at me again I won’t be responsible for my actions. I’m not trying to make this political. Then again, I’m not the one who convinced a bunch of rubes to shout “death panel” at the top of their clueless, uninformed lungs. Because, right now, here is the reality…
Treatment, treatment, treatment, hospice.
Notice that there’s nothing between the last treatment and hospice. That’s the gaping hole. And in case anyone thinks I’m drawing on one incident let me put your arguments to rest. This is my fourth hospice situation, and every one of them traveled the same path.
When a person faces a terminal illness their perspective changes. Instead of focusing on being “cured” – which they accept isn’t an option – they focus on how much time they can buy. As a 47 year old, divorced mother of two teenage boys my friend was obsessed with buying time. I completely understood.
Time Mattered.
And yet, time was the one thing not discussed. Not by her, or me, or her doctor. It was the elephant in the room. All of us knew time was running out. None of us discussed it. Sometimes saying things out loud makes them more real… too real?
Before I continue, let me say that Hospice is the most wonderful institution. I can’t say enough good things about this organization. I am also not bashing doctors. Their job is to treat illness/disease.
What I am saying is that there’s a gap between the end of the doctor’s job and the beginning of Hospice care. It’s a jarring gap that knocks the breath out of the patient, and it’s a gap that needs to be filled.
While I was in the hospital room with my friend a hospice representative visited the woman in the next bed. The woman asked the hospice person to leave, kept saying that she wasn’t ready for this conversation, that she had no idea she was that sick.
I cried for that woman. Guess you can add another “treatment, treatment, treatment, hospice” experience to my list. And while I understand how hard it must be to tell a person that they are dying, relying on euphemisms like “get your affairs in order” followed quickly by a discussion of the next treatment doesn’t help. It’s a mixed message.
What I’m trying to point out is that there’s a step missing in end of life care, and it needs to be filled. Now. And while some people may accept the end of their life in a pragmatic fashion, most do not. To rely on someone in this situation to be clear-headed and pragmatic isn’t realistic and can only be put forth by someone who has never sat and talked with someone facing their own death – especially someone who’s young.
There is a difference between knowing something in your heart and saying the words out loud – words that no one seems capable of uttering.
And even though everyone knows the unspoken truth the transition between not talking about death to only talking about death is mentally and physically devastating. We waited in that hospital room for 5 days until the oncologist showed up and broke the news. The next day the hospice team took over. No doctors turned into a constant parade of doctors, hospice nurses, etc. The goal: Get her ready to go home and die.
The day she was rushed to the emergency room she was scheduled to receive chemotherapy – in fact, she was already at the Helen Graham center. Treatment (think buying time) was still scheduled. And while she knew her condition was deteriorating, she never expected it to happen so quickly. In fairness, I don’t think anyone in this situation envisions how it will play out.
My mother asked me what I thought was needed, and the first thing that popped out of my mouth was a Lady in Waiting. Someone who was with the patient from the “get your affairs in order” talk until (and during) hospice enters. Someone whose sole purpose was the transition from a bad situation into the worse situation ever.
I tried to be that person, and failed. She was so frightened, and I was too close to her and the situation. I knew she was dying. I knew, just by looking at her, that time had run out. I knew it and said nothing. I honestly didn’t know what to say, and I didn’t want to take her down a path that would add to her fears. I’m simply not qualified to take that road. And while we did discuss her dying we both shied away from the reality. It was truly amazing how many conversations we had which deliberately avoided certain words: death and dying. Another elephant in the room.
I guess I think that’s what’s really missing. Someone who has the necessary medical training. Someone who is deeply compassionate, but who isn’t intimately involved with the patient. Someone who can help the dying person navigate the transition – part friend, part advocate. A listener.
Someone who helps the person maintain control of the time they have left.
Reread that last sentence. It’s the crux of the problem I’m talking about. In every hospice situation I’ve experienced control is what falls through the gaps. I’m not referring to the big things (wills, what happens to the kids, finances, or funeral preparations – a terminally ill patient will have handled most, if not all, of those). It always comes down to the little things – a shower, is her bandana on straight, the dignity of using a bathroom instead of a bedpan, the way your visitors talk amongst themselves while you’re in the room, what type of medications you prefer… the way the person becomes their disease.
And the patient needs a safe person to talk with. One of the major strains on a dying person is helping others come to terms with their situation. Sometimes this involves them consoling their family. Other times it involves helping family and friends with denial. And denial, at least when face to face with the person dying, is in huge supply.
In one of my other hospice situations the dying person whispered to my mother, “No one will let me cry.”
In my friend’s situation she would smiled and nod at every person who said, “New cures are being developed every day.” After they left she turned to me and said, “Even if a cure is developed tomorrow it’s too late for me.”
Despite how it sounds, I am not criticizing these people. One of the reasons I didn’t “spin” the situation was because she wouldn’t let me – something very difficult at the time, but, as I sit here now, I realize I wouldn’t have give up those conversations for all the world. My friend and I did the best we could with the hand we were dealt. I just know both of us would have appreciated a little help and a little direction. Nothing could have changed the heartbreaking outcome, but the path we traveled could have been a lot smoother.
In the end, all the hospice preparations didn’t come to pass. She finally got home late Friday night and died very early Sunday morning. And I would be remiss if I didn’t mention how truly amazing she was during her entire illness. She always smiled, laughed, and made ornery jokes. She never became her disease, and while your first thought when you met her (with her brightly colored bandanas and fun hats) was that she was very, very ill, once you started talking with her and experiencing her silly personality and snarky humor you forgot the disease and enjoyed the person.
And while I, and every one else who knew and loved her, will survive there is another gaping hole (in our hearts) that can never be filled.
I realize that I’ve rambled my way through this post – I’ve been rambling through this experience for quite a while – and for those of you still reading… thank you.