Monday, December 19, 2011

"Wanna die? I'll be right over...what, 'live' you say? Sorry, another call coming in." BC official care policy

After going out on Friday, I went to sleep and stayed asleep until Sunday. I couldn’t be woken after the 12 hour mark past when I had eaten. Linda called the VIHA palliative help line to follow up on the request earlier in the week to get an IV to push fluids and nutrients.

By the time VIHA called later Sunday, I was awake. The VIHA district nurse said regarding care, that I had signed a DNR. I told them that while they asked (indeed, demanded), I had not. When entering VIHA care, the requested that I sign a DNR. When I was deemed eligible for palliative they again requested a DNR (‘do not resuscitate’). I choose not to, they didn't like it but said they accepted it. See, I want to live as long and as much as possible. The nurse said, "That's not standard." (the not wanting to die) I assumed at the time she meant those IN the program, those dying.

The attitude which we have been getting is that palliative is for those who are going to die to get on with it as cost effectively as possible. It is assumed that just because you have a terminal disease or are end stage, or you have organs shutting down that you should die as soon as possible and I think talking to me, the person dying, not the family unnerves them. Though I was praised by G, the nurse for having a 'good spirit' about death, when I made a joke about it.

Linda and I were and are both disappointed when any simple action which could be taken care of by a response team we were told to go to the GP. Our GP has a five week wait to get in. The response was, 'and...'

G. who called from VIHA said, “What is it exactly you want?”

“I want to live.” And repeated Linda’s request for an IV or a port for when an IV was needed. We had been told that the response team was for dying at home with the comforts AND medical care. An IV for pain medication they would consider, not for fluids.

G replied, “We do NOT replenish fluids or engage in life preserving actions.” The VIHA district nurse told me was the official policy. But said that I could appeal and ‘be considered on a case by case basis.’

Linda and I were stunned. To avoid clogging the ER, we were told the palliative program would help medically in the home. The last few times we’ve gone to ER it has been, ‘here’s some morphine, not much we can do, there is the door.’

The GP thinks that a shutting down of organs is of the top two ways I will die and to increase the chance of coming back, and IV would allow the toxins building up to be flushed. We were told that a nurse could be sent if I was incontinent to show Linda how to put down a pad. No, it was that the bladder and liver were shutting down and simply not producing anything, or once awake, all that came out was clear water, not yellow, no proteins.

Having visited the palliative centre, the rooms, which are mostly private have lounge chairs and sleeper chairs for family members but for the person dying, there is the same hospital bed and a telly, a mini one on an arm for shared rooms, as the only distraction.

‘I’ve told you where else you can go (the GP), and I have to take another call.’ And G hung up.

If there is some sort of care for those, non-cancer, who are having a failing central nervous system and autonomic system in Victoria, we would love to know about it. It is terrifying to go to sleep and not know how many days it might be until I wake up again. But also, the incentive, once awake, to DO, knowing that the medico’s, whose numbers and salaries eat up the $1,000,000 per bed per year fundraising and budget at the hospice along with TWO emergency response teams, and boasting 500 volunteers, it seems odd that a $300-400 telly is the amount of ‘comfort and quality of life’ beyond painkillers, which is offered or available. And in the community? So far, zero the hero. We were given a number and told if there was a medical issue or change to call it.

Linda has called it, and nothing that happens seems to be anything they can do something about. Last time, it was about organ failure and massive bleeding, I was told a ‘spiritual guide’ would talk to me in two hours. They called four days later, then wondered if they had offended me by something they said when I did not answer (I did not answer because I was in an unresponsive unconscious state).

When the district nurse says the official policy is to NOT try to preserve life with a simple IV even when the person wants it…it seems a case of cost over care medicine in extreme.


Lorna, Bob and Liam said...

Oh, seriously, what a clusterfuck.

Sorry, I usually try for a comforting, empathetic, sensitive response. And this is just so stupidly awful that I find myself speechless (well, apparently, not totally).

What in god's green earth is there to say about the type of care you (aren't) getting?

Just... sorry. Jayzus. Maybe I'll be more profound later.

Hang in there, love you.

Lorna, Bob and Liam

SharonMV said...

That's so awful Beth. It's so little to ask, a simple IV. If you could just get fluids, when you're unable to eat or drink would help. It's not even expensive, and you are at home, not taking up hospital bed space. I guess your not even allowed to be comfortable while dying. Terrible policy. I can't believe the way people talk to you, even after all that has happened before.

Love, Sharon

Baba Yaga said...


Yes, that does sound like "hurry up and die". And while you're at it, please don't do any inconvenient 'being ill'. (I can't help thinking 'spiritual guidance' from that source probably wouldn't be much cop, for you.)

I'm beyond boggled. As usual, I keep thinking there must be some sort of political action possible; but what?

Is there any way an IV could be got other than via VIHA? (I think that's part of what you're asking someone out there to tell you. Lie, get the equipment from VIHA, and procure fluids elsewhere?! Not that lying is a Beth thing to do.)

If it's theoretically possible and we could help to make it really so...

Being given a number to call, and then finding that when called, there's no response reminds me of my years in the psych system. I've had cynical spells of thinking the number was just there to give an illusion of support, so that one wouldn't (be able to) ask for the real thing.

Hopping mad.

Elizabeth McClung said...

Thanks for the comments, I feel I live a very surreal, 'furtive zombie' like existance: if they can catch me, they'll kill me!

Lorna, Bob and Liam: the standard operating procedure seems to be set up for seniors and those dying of cancer. From what has been said to us, and experience, as well as reported treatment, the idea that old people should die, and what is the problem with that is odd in a city where not one but dozens of 75+ year olds run the annual TC 10K. From a blog in Vancouver, the treatment of terminal cancer was not significantly better.

To ask 'What is the process to extend life during a terminal illness' and be told there is none has both Linda and I exhausted and depressed.

SharonMV: Yes, I agree, they want to limit bed use at the hospital, so why won't they help bed use at home. The won't even put in an IV port without it going through surgery, and a doctors request, a wait for space and then putting me under.

Linda: "But she has depressed respiration"
Doctor: "Oh, then maybe not putting her under."

I had a main line put in on a carpet floor by the cardiac team medic EMTS, but OFFICIALLY...

I think for those who are seeing their parents decline, the fight to keep them alive is not so strong, but for me and others with rapid diseases, there seems no protocol at all. Thanks Sharon, I hope things are getting better. As you can see, the idea of getting IVIG at home here is probably 20 years in the future. My grandmother had to hire a private ambulance to get her blood transfusion at the hospital every three then two weeks due to lymphomia. But putting in a port or hanging a bag in the facility where she lived.......nope.

It is frustrating to know that I decline not because methods to improve my health aren't there, nor are they expensive, indeed, I would be saving people of BC huge amounts to have an IV at home with a VIHA nurse to administer, but full hospitalization is required instead so um, $45 ($35 an hour for the nurse and 10 for fluid and IV bag) or $2,000 minimum for hospitalization: we choose hospitalization.

Elizabeth McClung said...

Baba Yaga: I am sorry you have had that experience. A good GP saved me from that loop, as well as a friend who did a sort of layer (like Dante) of support map for me (inner circle: those to call anytime, 1 or 2, next circle: those to call occassionally when needed, 3-5, next circle: those to call in rare situations - and made a 'safe room' at home to go into when I was past what I had written up as a contract of feelings and actions - so if I cut, I went into the room, where there were books, but no sharp items). I hope you are able to find the same. I'll give you my number to call, as I am oft up very late, and if you need it, I would be happy to be here for thee

My experiences with UK 'support' for mental health was dire. I had two people talk to me about this, one who gave me his pamphlet when he told the doctor he was hearing voices telling him to do things. It was green and said at the top: So, you are hearing voices...

And it was a pamphlet so those who heard voices were not treated or taken into treatment but given this instead. One came into my bookshop regularly, along with the person who attacked people with a hammer. For me, I asked the GP, what the protocol for a manic or depressive episode. It was, 'show up at hospital and they will decide if you are to be locked up' - Really? I asked, 'a locked ward or nothing?' Yes. I was given a number which when desperate I called and all they would say is, "I'm listening." I told them that furniture could as well, but I needed help or advice. No, no, just listening. The city run counselling matched me for rape counselling with a man who started by saying if I didn't obey him there would be repercussions.

I told him that I was not comfortable talking about rape to him. He said it was not a problem and said not to come back. The next match up was a woman who, I found later had been banned for several years and a typical response to, "I felt depressed and tried to kill myself..." was

"You're still alive so you seem like a bit of a failure then."

The 'Specialist' mental health department of the hospital banned me for taking a prozac pen (a pen given by a manufacturer - I was manic, I took the pen and asked the doctor what other SSRI's, SNRI's and NRI's he knew, or if the pen was just his memory aid - and that was it!) and sent a letter to my GP saying that I needed treatment but they would not provide it as I did not appropriately acknowledge their authority. Literally that they don't treat people with mental illnesses who, when on no medication, someone in a mild manic or depressed state, nor people who aren't polite at all times. I think that and when I took 25 people with me as they kept trying to add people every meeting saying it is a teaching hospital. I told them I was teaching about 'assumption in authority models' and the class would be watching, but I was sure they had no problem as they had oft said, "This is a teaching hospital."

JaneB said...

Oh Beth, why is nothing ever easy?

Battling the UK system myself at present on the mental health front. It is impressively well designed to screen out the really depressed by making you do a lot of stuff, like... oh, call strangers on the phone and describe all your symptoms to them (i don't like phones or talking to total strangers (even if I can see them) when I'm WELL, never mind when I'm trying to access help).

It's clearly very naughty of you to be ill in such an untidy way! You carry on showing them up! And if you think of anything your readers can do to help - just ask.

GirlWithTheCane said...

Have you considered going to the media?

I know it's drastic and a pain-in-the-ass for you to have to do...but it's action that you've been legitimately pushed to...

With love,


Raccoon said...

For $300, you can get a 32 inch flatscreen TV.

They sound like Dr. Kevorkian, only without his bedside manner. Or anybody's bedside manner, for that matter.

Show Linda out to put a pad down… Linda is not mentally deficient, and you are not a puppy to be house trained!

Spiritual guidance will call you back… That sounds like calling 911 and getting put on hold for 45 minutes…

However, I'm still here. And you are still here. And a lot of other people are still here.

And the name of your power chair is?


Kita said...

Words just fail me, Beth. Just totally. wtf are they playing at?
Just hang in there sweetie. Stay alive and confound them f*ckers. Be well. <3

Neil said...

Yeah, yeah, the "standard" patient is dying, and they know what to do for that, if the paitient is patient enough to lie down and die right.

But you're unusual. Maybe even unusually unusual for a terminal patient. However, the medical profession keeps insisting that no two cases are ever totally alike. And the health-"care" system in BC SHOULD be able to figure out by now that this particular patient, one Mrs. B. McClung, is different enough to stand out like a sore thumb; and they SHOULD be working to adapt their care to your needs.

And (quoting "Firefly" here) if wishes were horses, we'd all be eatin' steak.

My Beloved had a port installed for chemotherapy use; local anesthetic and no trouble at all. A nurse had to check it weekly and clean it, but that could be done (here at least) at a health authority clinic.

Your needle phobia MIGHT prove to be a problem when installing a port. But you could treat it like another piercing (assuming you have pierced, um, ears?), and you could die with a little more peace of mind and healthy interludes. What's VIHA's problem with that? (I'd bet they're a pack of control freaks.)

I suppose if you went into a long-term care facility, they'd be willing to install the port for THEIR convenience.

Your case is different, but you have a loving wife who's willing to help you, and you want to die as comfortably as possible; I can't see anything wrong with that scenario. VIHA, apparently, can see problems there; but I suspect the problems are theirs, not yours.

I tear my hair on your behalf, O wonderful Internet niece.

and I apologize for being absent for a time; life seems to get in the way of Internet time for me lately.

Love and zen hugs,

Anonymous said...

You do realize that they are not there to sustain life, right? The help people DIE, that is what they are there for. If you want to live, you go to the hospital or doctors. I thank God everyday that we had hospice come in when my dad was at home dying of cancer. They did not do anything to keep him with us longer, however they did make letting him go so much eaiser. Please do not make them out to be evil, you are just looking for help with the wrong group. They are not there to KEEP you alive...jeeze.

Elizabeth McClung said...

Anon: No, hospice does not 'help people die' but gives care to the dying.

Hospice means: "Hospice is a type of care and a philosophy of care that focuses on the palliation of a terminally ill patient's symptoms. These symptoms can be physical, emotional, spiritual or social in nature." It comes out of the Crusade knights of the hospitaler of St. John, who in the 11th century gave care and aid to the knights. I've been to their first sanctuary in Rhodes.

The Victoria Hospice says that the patient is the center of care. 'Symptom management' is stated as a goal, that is the basis of prolonging life: treating the symptoms which occur as they occur.

With my disease, as there is no treatment, it has been symptom management for over four years.

If an organization is dedicated solely to the rapid death of individual it might be a Euthenasia Centre, or if it is to help families, it might be a transition centre, but it is not rightly a hospice. The web page for the Victoria hospice states one type of action but does another.

The focus of any hospice must be the patient, and the patient wishes.

Kate J said...

Unbelievable! I mean, only too believable, based on your experiences so far of the 'caring' services. Want to live? Is this too much to ask? A young woman, with all that thirst for life? And so much still to give! Why are 'they' surprised that you want to live? And as for spiritual guidance... what on earth is that about??!!
Hang in there, Beth.
Love & peace

Noisyworld said...

Oh good grief, the idiotic nonsense strikes again.

Joined-up thinking- I think not :(

Ridiculous, just ridiculous >:(

I hope you find the loophole that gets things done for YOU not the system :)

Lene Andersen said...

that's disgraceful. Just bloody disgraceful. I thought palliative was about more than speeding up the process.

Wish I could help.

Tina Russell said...

That’s really weird and sad. I guess most people don’t have the strength to take a position of, “I accept that my body is dying, I want to live as long and as I can,” so you’d think they’d support someone with your courage and perspective. Instead it sounds more like “we’re used to people being not so strong, so please try being not so strong.” Rrrrghhh it makes me mad.