Losing Independence: “It’s a Distant Place to Me Now”

It was common practice to discuss individual patients with nursing and other staff outside the room before they enter. On one occasion, the team discussed that Vincent had “failed stairs”, had a presumed diagnosis of MDS

(myelodyplastic syndrome)^​ which would be likely to lead to repeated anaemia, and was a smoker but seemed unaware of safety issues. They were all in broad agreement that he was unsafe to go home. They then entered his room,

ostensibly to ask his opinion on the matter:

Dr Rockwood: let me ask you a very serious question…you have this problem with your blood, some problems with your chest

…taking everything into consideration do you feel you can manage at home?

V: yes

Dr: is that where you want to go?

V: yes

Dr Rockwood: in order to get home you will have to cooperate with the physio…I know you have some pain but we have given you paracetamol, yes?…anything to ask?

V: yes, I want to go

This interaction was framed in such a way as to suggest that there are likely to be problems with going home. The “very serious question” and the fact that the doctor repeated his question “is that where you want to go?” belied an

underlying sense that this was not the answer he sought. Over time, concerns over safety meant that Vincent experienced multiple assessments by various professionals tasked with enabling him to go home safely, but each time there were problems raised until he became increasingly aware that going home would not be as straightforward as he had originally hoped. His fear about coping was compounded when he was asked questions.

Jo (Social Worker): “I am here to help get you some help at home. Are you wanting to go home?”

V: “It must be better than being here”

J: “The carers I can set up for you will be excellent”

V: “In here they're marvellous. There's toast whenever you want it”

J: “Well that’s what I'm here to help with, to make sure this care continues when you are home....What about washing and dressing?”

V: “Oh, I shall certainly need that”

J: “They're called the re-ablement team. That means they will try not to take away your independence, just to give you help when you need it. They'll do as much or as little as you tell them, just what you need. Is that okay?”

V: (Laughs – but cynically, there is no humour. His eyes are

blank. He looks away, stops eating his trifle and stares at a blank spot on the wall)

J: “Is that what you want?”

V: “Anything love, anything” (resigned slump. She leaves)

Vincent was torn between a desperate need to get home to his former

normality, and fear about how he would cope. His ambivalence was exemplified in the apparent contradiction: “it must be better than being here”, followed closely by “in here they’re marvellous”.

Sometimes interactions that detracted from Vincent’s independence, or else implied an increasing level of need, led to expressions of anger or frustration. In the following excerpt, Claire (a student nurse) enters with a wash bowl and flannel. On seeing me by the bedside she backs away:

St/N: “I’ll come back, I were going to give you a wash”

V – “Yippee. Yippee. I’ll enjoy a wash (faking enthusiasm) I’m kidding. I’m not telling the truth”

(apologetically when he sees student nurse looking flustered) “I just get a bit stressed up worrying about it all”

Again, in the following extract Vincent was talking with Jo, a social worker about his exact care requirements when something that is said triggers an angered response:

Jo: “Do you think you'd like 4 carers a day?”

V: (stares straight ahead) “Too much”

Jo: “Three?”

V: “Once in a morning and then leave me be”

Jo: “What about your evening meals?”

V: “No, I don't want anybody”

Jo: “What about bedtime?”

V: (angrily turns to look at her) “I don't want anybody in my home at bedtime! I want to bloody go upstairs, switch on the electric blanket, smoke a cigar, put it out, go to bed”

During his admission, Vincent gradually surrendered his autonomy as decisions relating to his future were taken on by different professionals. The excerpts suggest he was both aware of this and simultaneously powerless to do anything about it. In the following conversation, he describes the sense of continuously waiting - although for what, he cannot say:

Vincent: “I just want each hour to pass. I’m stuck like a pig in a poke”

Me: “What would you do if you were at home?”

V: “Sit on the sofa, watch the telly, lock the front door. Go upstairs, switch the blanket on 10 minutes before I go in” [eye contact, looks at me, frowns and rolls his eyes, appears angry]

Me: “Are you cross?”

V: “I’m always cross. I’m a cross person. I don’t know when, why, what is going to happen”

Me: “Is going home the most important thing for you?”

V: “No”

Me: “What else is, then?”

V: “I don't know, I’m just waiting, don't know what’s happening, and you don't know either” [coughs, liquid] (lifts legs up and lets them flop down again. Eye contact only when angry, rest of time stare fixed ahead).

6.2.2 Choicelessness

Time after time, the decision for Vincent to go home was revoked for one

reason or another. On one occasion, it was because his blood results have come back abnormal. Routine blood tests revealed an abnormality thought to be unrelated to his primary condition; he was severely anaemic. Doctors were concerned that he had myelodysplasia, a precursor to leukaemia. A repeat blood test was ordered to ascertain the anaemia’s severity. A definitive

diagnosis could only be gained through a bone marrow biopsy, which Vincent was offered but declined (this aspect of his care is discussed further in

Iatrogenic Suffering).

The absence of a diagnosis contributed to Vincent’s ‘unimaginable futures’

(Kaufman 2006, p198). Vincent was invited to consent to investigation based on the probability that the disease, if diagnosed, was treatable. Doctors were quick to point out that MDS is a precursor to leukaemia that may or may not develop into the full-blown malignancy. Even if it were to develop doctors could not estimate the potential timescale for this conversion and there was every likelihood that Vincent would deteriorate and die from his existing advanced respiratory disease prior to then. So, in the absence of leukaemia, the treatable element of MDS was to have repeated blood transfusions to manage the

anaemia.

This made sense on one level; anaemia can cause fatigue and breathlessness, and these were already serious problems for Vincent that impacted daily on his quality of life and sense of wellbeing. However, the likelihood would be that he would require regular admissions to hospital for transfusions and given the recursive cascade he had undergone on this admission it would be unlikely that he would ever be admitted for a simple intervention like a transfusion. In

summary then Vincent was being asked to make a choice about an

investigation for a disease which may or may not become life-threatening, and for which the ongoing treatment may or may not be feasible. Given that he had already expressed ambivalence about being in hospital in the first instance and a determination to avoid coming back in again, coupled with his fears about the investigative procedure itself, it was easy to see the root of his reluctance. It was not mere belligerence. Choicelessness framed as choice was a recurrent theme in Vincent’s care. Often, he had little or no agency in what was

happening, and yet was presented with various choices as though he were in

control. It appears that he was well aware of this choiceless state hence his resistance to many of the apparent choices he was offered.

Vincent’s frustration with the many changes in plan were most apparent at night, when he frequently becomes agitated and angry – most often because he was apparently trying to leave the ward to smoke a cigar:

It is 1:20 in the morning. V is on the move again. Keelie, a healthcare assistant, finds him leaning in the frame of the doorway to his room.

K: “You’re not going anywhere if you hurt yourself”

V: “I want to see my friends, they’ll be wondering where I am.

Where’s all my money and my keys?”

K: “I do understand, sweetheart”

V: “What do you bloody understand?”

K: “That you want to go home”

V: “They’ll bloody change their minds again tomorrow”

K: “No, they won’t. Now go to sleep, there’s no transport to take you home now, it’s the middle of the night. I don’t drive so I can’t take you”

V: (loudly now) “I just want a bloody cigar”

K: “You can’t smoke in hospital”

V: “Course you bloody can”

Pam, the senior nurse, comes in:

Pam: “The facts are these: you’re going home in a few hours, we can’t get you home now, if you keep acting like this you’ll make yourself poorly. Calm down now and get some sleep. The

doctors going to come and see you to make sure that your hip is okay. Do you want your light off?”

V: “No” (turns over)

Pam, to me and Keelie: “It’s all so complicated, this mental

capacity thing. Like, he’s got his wits around him during the day but still, earlier we had a chat and he was happy about going home. I reassured him about his money, and like now he’s forgotten and he’s got himself into such a state and I just think about his stairs at home…”

He is calming down now. I sit with him and listen to him

wondering out loud: “Can I manage at home? Can I get up and down the steps?”

He falls asleep.

While on the ward he fell numerous times, most usually at night when disorientated and trying to go outside for a cigar. He would get out of bed, momentarily forgetting that his body was too weak to walk. Staff were aware of his smoking and there was some talk about nicotine replacement., but this didn’t happen; Vincent laughed that you can’t compare a patch to a cigar. They

viewed his agitation as a physiological withdrawal from nicotine, but for Vincent, cigar smoking seemed more than that. It was a symbol of normality and

autonomy:

“Sometimes… I just want to lift a cigar to my lips, light the bloody thing, and inhale” (slowly)…(he leans back, closes his eyes, and smiles) “…like normal.”