FORENINGEN FOR PALLIATIV INDSATS8. NATIONALE KONGRES

25. September 2015

CarinG for Patients with a wish to die in palliative care –

Boundaries in understanding what the patients wants

Kathrin Ohnsorge

UNIVERSITÄT ZU LÜBECK INSTITUT FÜR MEDIZINGESCHICHTE UND WISSENSCHAFTSFORSCHUNG

BACKGROUND

• Little knowledge of what patients actually experience and mean when expressing a wish to die (WtD).

• Few prospective studies including patients; few qualitative research.

• Most studies narrow their focus to one specific form of the WtD: the wish to hasten death.

• Many studies focusing on the causal factors leading to a whish to die.

• Few information on what such a wish might signify in the context of a persons’ life.

Palliative non-oncology patients’ wish to die. The attitudes and concerns of patients with neurological diseases, organ

failure or frailty about the end of life and dying.

Aim of the study: To better understand what dying terminally ill patients mean and experience when expressing a wish to die

STUDY DESIGN & SAMPLE

Phenomenological-interpretative approach based ona)Grounded Theory (Charmaz 2006)b)Interpretative Phenomenological Analysis (Smith et al.

2009)• Semi-structured interviews, audio-taped and transcribed• Previous study: 30 patients, relatives and health

professionals (116 interviews); this study: 3 x 10 case studies (ca. 150 interviews in total): motoneuron diseases (ALS, MS), organ failure (heart, lung), frailty

• 3 different palliative care settings: palliative oncology ward, ambulant palliative care, hospice

• Theoretical sampling• Expression of a WTD is not an inclusion criterion• Screening for depression, not as exclusion criterion per se

INCLUSION AND EXCLUSION CRITERIA

Included are palliative patients (according to Gold Standard Framework):

(i)With incurable disease or in advanced age with multi-morbidity,

(ii)The patient is informed about prognosis.(iii)The informed patient consents to the study.(iv)The patient is cognitively capable to participate in the

interview. (v)The treating physician agrees that the patient is capable to

participate in the interview.

Excluded are(vi) Patients with relevant cognitive impairment.(vii) Patients at risk of destabilization through the interview

(i.e. severe depression).

INCLUSION AND EXCLUSION CRITERIA

Included are palliative patients (according to Gold Standard Framework):

(i)With incurable disease or in advanced age with multi-morbidity,

(ii)The patient is informed about prognosis.(iii)The informed patient consents to the study.(iv)The patient is cognitively capable to participate in the

interview. (v)The treating physician agrees that the patient is capable to

participate in the interview.

Excluded are(vi) Patients with relevant cognitive impairment.(vii) Patients at risk of destabilization through the interview

(i.e. severe depression).

INTERVIEW GUIDE

Semi-structured interviews; participant has the lead;Progession scale in the interview guide; patients‘ define

WTD.

Central interview questions:• In the course of your illness, did you ever wish your

disease to proceed more rapidly? • Can you imagine situations in which you would prefer not

to continue living? • Have you ever thought of putting an end to your life?

Tumor Oncosuisse-Studie

QoL

Th.

t

Organ failure heart, lung, kidney

Old age, frailty

Motoneuron diseaseALS

1.Intention of a wish to die: what the wish is aiming at

2. Motivations for a wish to die: why a WtD is there

a) reasonsb) meanings c) functions

3. Social interactions around the WtD

Three dimensions important for the understanding of a wish

to die

Intentions of

Wish to Die Statements

TWO OBSERVATIONS

1. Not all wishes to die are wishes to hasten death

2. We observed that many participants spoke about their wish to die with regard to an imagination they had about dying. However, participants came to a different point of reasoning when their wishes became concrete and were directly linked to action.

•‘Wish to die ’ - an aspiration that is directed at the imagination that dying should come.•‘Will to die’ - an aspiration arising from a wish, but directed at or already involved in an action, the action to end ones’ life.

SHIFTING INTENTIONS

• Frequently what patients wished for themselves did not simply fall into only one of the categories.

• The analysis revealed that coexisting wishes or ideas were a frequent phenomenon among the patients we interviewed.

• P1: Just that, if I may say so, you die. And perhaps you’d be glad, once it’s over, to be able to shut the door, close the chapter. [...] But properly closed. [...]

• I: But have I understood you correctly now: you would be glad if the door were already shut?

• P1: No, no. It can be open… You [have] the feeling time and again, perhaps you’ll still find something with which to open the lock. And that it’ll be ok again then. […] There’s hope. But where do you find… hope?

AMBIVALENCE

EVOLVEMENT OVER THE COURSE OF TIME

• Frequently, patients reported that their main preferences were shifting over the course of time.

• But most strikingly, patients reported to experience various thoughts and wishes that were continuously evaluated against each other.

• But 8 patients reported to have a relatively stable wish over the course of time.

I: Could you imagine a situation, in which you would arrive one day at the point, where you realize, you do not want to live any longer?

P21: (pause) Well, actually I am at that point. And really bad it will become, when I for example ... could not eat any longer. But actually, I am at this point. Now, I do not want any longer! [...]

P21: Now I am simply... [hand falls down]. Now it is fine, now He [God] can come for me. I: Now You can come for her. P21: [hand falls down] Now He should come for me!

I: And you wouldn‘t need to do something for or against this [her dying]?P21: No, ehm ... that really isn‘t in my hands.

DESIRING TO DIE

P22: But there will arrive the point in time, where „to preserve life“ will be a torment and to set an end to life would be a reasonable solution.

P29: Yes, I am happy that I join it [Exit]. When I will be really, really, really bad, then this thought always comes back: When it is really not possible, then you really can cut it short. In the very last moment I just could it...If it comes even worse than now.

HYPOTHETICALLY CONSIDERING HASTENING DEATH

ACTUALLY CONSIDERING HASTENING DEATH, BUT AT THE MOMENT (FOR MORAL OR OTHER

REASONS) IT IS NOT AN OPTION

P 12: Look, I‘m just too well. I cannot die [laughter], I‘m too well. I have no pain, nothing. That I also do not have to have; that I do not necessarily want to have. But I wait now already such a long time for death. [...] I am... how should I say, all-around satisfied. I just want, that soon is closing time. But God doesn‘t want me yet. [...]

I: [Could you imagine]...to contribute, that it happens faster? Would you like, to receive something to make it happen faster?

P12 : Yes, if that doesn‘t fall under sucide. I: Simply something, that in that sense of hastening death.P12: Yes.

P13 was in possession of a prescription for the lethal drug used by EXIT:

“[When metastasis was diagnosed] I immediately set about the option of Exit … because I said, I would like to have this possibility in any case. If for any reason it becomes unbearable for me, but I’m still not dying, then I would like to bring about my own death. And I saw to it all, that it was ready, that I had the prescription, and I talked to these people. That’s sort of there on demand now”.

ACTING TOWARDS DYING

SOME CONSIDERATIONS

• Categories: not static, nor necessarily a linear process • EoL Wishes: frequently neither static nor very clear-cut

or classifiable as only a ‘wish to live’ or a ‘wish to die’.• Clinical setting: patients have frequently not just one of

these wishes, but contemporaneously several.• WtD: rather dynamic and composed of different

statements that were continuously evaluated against each other.

• This dynamic process of WTDS does not mean, that patients’ wishes are generally unstable or that a “will to die” can never be called ‘persistent. Eight patients in our study reported to have a stable wish.

REASONS, MEANINGS, FUNCTIONS

OF WISH TO DIE STATEMENTS

CAUSAL FACTORS

• Many studies investigate on the causal factors that trigger or sustain a WTD in terminally ill patients.

• Pain or physical distress seem to be less important triggering factors.

• Psycho-social and spiritual factors play a key role in the development and sustenance of such wishes (Monteforte-Royo 2010; Hudson 2006; Schröder 2007)

DEFINITIONS

• Reasons are factors that patients understand as causing them to have or accounting for them having a WtD.

• Meanings are the sense patients attribute to a WtD within larger narratives that reflect personal values and moral understandings.

• Functions are the effects, sometimes intended, sometimes unintended, of a WtD or of statements on either the internal emotional household of the patient, or on other people in their relationships.

REASONS

• physical reasons: the experience of acute or chronic pain, nausea, drowsiness and respiratory distress.

• psychological reasons: confusion, fear to be “connected to tubes”, fear of the future and fear of loosing dignity.

• social reasons: the experience of loneliness, social isolation, the experience of abandonment by their partners or family due to their illness; sudden loss of living situation, income and no existing social network; fear of being a burden to others.

• Existential and spiritual reasons: experience of dependency, loss of dignity, loss of meaning, loss of activity and the feeling of being locked into a disabled body, awareness of the terminality of the current condition, uncertainty of how the dying process will happen, experience of a profound lack of prospects.

MEANINGS

A wish to die can be a wish…

1. To allow a life-ending process to take its course2. To let death put an end to severe suffering3. To end a situation that is seen as an unreasonable demand4. To spare others from the burden of oneself5. To preserve self-determination in the last moments of life6. To end a life that is now without value7. To move on to another reality8. To be an example to others9. To not have to wait until death arrives

2 TO LET DEATH PUT AN END TO SEVERE SUFFERING

P29: “ It’ s horrible, I can tell you. It’ s horrible. [… ] thewhole situation. … Not being able to get out of it, and every morning the same thing: waking up, being washed, lying there till the evening, the same pain”.

I: I understand.

P29: I had to sign something and that is now deposed in the office here. And then you have to get that and send it. And then, you know that for sure, then somebody comes and talks it over again with me, to not hasten things.

4 TO SPARE OTHERS FROM THE BURDEN OF ONESELF

P2: “I really would like to leave [die]. Because I want to unburden the others. I feel ... I feel embarrassed that they always have to .. They live their own lives […] I always cared for myself and even for others, until the very end, and then it is hard to accept this. They tell me: ring, if you need something, but look! This is difficult for me.”

 P4: “It is a right, if one has the feeling of being

burdened, I am a burden to others, then I want to put it [the life] to an end.”

5 TO PRESERVE SELF-DETERMINATION IN THE LAST MOMENTS OF LIFE

P 13: “ I immediately turned to the option of Exit[pause], because I said I’ d like to have this optionwhatever happens. If things become unbearable forme for some reason, but I’ m still not dying, then I’ dlike to be able to grant myself my own death. And Isaw to everything, so that it’ s ready, that I have theprescription, and talked to those people. They’ re quasion call now. [… ] This is really only about ending asituation that has become unbearable, and not havingto rely on either being hit by another stroke or somedoctor being understanding after all. I want to be ableto keep this in my own hands for when the momentcomes. I was a very self-determined person all my life,and that’ s very important to me” .

FUNCTIONS

We observed that in the patients‘ narrative a wish to die might function as an:

1.Appeal2.Vehicle to speak about dying3.Re-establishing agency4.Manipulation

SOME CONSIDERATIONS

• WTDS should not be taken for their face-value without deeper exploration on its reasons, meanings, functions: A wish to die might not mean that the person wants nothing else than to die.

• WTDS might have a function, but it has in most cases however a meaning (counterexample: P25)

SOCIAL RELATIONS

AND

WISH TO DIE STATEMENTS

CONSTITUITIVE SOCIAL RELATIONS

The particular setting and social relationships of patients often had

a decisive influence on what the patient was wishing:

1. Wishing with respect to others: Many patients based their decisions on the assumed or real feelings and moral understandings of others.

2. Constitutive preconceptions of others3. Performative effects: Communicating wishes to die

often had particular implications for the patients themselves, i.e. new interpretations, reactions of others etc.

4. Master narratives: dominant cultural schemes that make individuals order and frame their experiences in a certain light: “Old people are an enormous expense to society” (P26)

A WTD is NOT a linear phenomena of sending a message from a transmitter to a receiver!

BOUNDERIES IN UNDERSTANDING A WTD

Preconceptions that hinder understanding:

•Normative ideas about the ‘good death’•Preconceptions about what patients mean: “Ambivalence” at the end of life•Preconceptions about how patients should behave: Acceptance of dying

NORMS & IDEAS ABOUT THE GOOD DEATH

Nurse of Elsa:

„It was on my evening round when she spontaneously said to me that she has had enough. And then I asked her more in detail, what she meant by ‘enough’. Then she told me: I would like to die, and I would like it most that you give me the big injection of morphine, if this is possible. [pause] And then I told her, that I couldn‘t do that, simply give her five milligram of morphine, or just such a syringe at once, that wouldn‘t go, that I was not allowed to do. And that she did understand also, after I told her the reasons, so, that this is not wellcome by the mission statement of our institution. And then I then asked her if she was afraid of dying. And then she said yes, she was afraid that it would hurt too much. And she showed emotions, so had tears in her eyes and then said that it would be very difficult for her. And then I stayed a bit with her, was first a bit quiet. And then I still asked her, whether she had everything organized and whether she would still have to settle something. And she said: No, no, that would be all right.“

NORMS & IDEAS ABOUT THE GOOD DEATH

Friend and only important social contact of Elsa:

•“And she actually knows that I have said in those days: please think about it. Of course, she has never again uttured a word. And I regret also that I said that, that I then did not say: if you want… But it was just my belief that it is still too early. And now I can not just come, hey listen... If she does not start [to talk about it].”

•“I would look to get me an answer to what the Bible says.”

AN UNHEARD, PERSISTENT WISH

Elsa herself (same week):

“I think my life is worth nothing, if I'm just here waiting. But I would like to just ... just, as I said, that it goes faster and as painless as possible. It would be nice if you could say: I fall asleep now, and awake no more tomorrow. That would be a dream! But this dream I probably will not be able to realize for me. Unfortunately! So my dream would be: You could say you take the pill, and tomorrow you will not wake up.”

AMBIVALENCE AT THE END OF LIFE

• Anna, in her 80ies, undiagnosed bowel cancer, declines further diagnostics and therapy.

• Hospice team: “The patient shows an impressive ambivalence”: - to nurses: “Let me go now. I want to go to the other side”- in critical moments she agrees twice to curative treatment (antibiotics against an infection causing a heart insufficiency)

• Tensions in the health care team: about what the patient actually wants, but also between nurses and physicians

• Patient labeled: “inconsistent decision making”; “double book keeping”

AMBIVALENCE AT THE END OF LIFE

• Two different narratives:- yes, I want to die to go to the other side (other level

of consciousness)- Yes, I would like to be able to walk again and go

homeAnna: “These wishes are actually in balance”

• Wishes seem logically contradictory, but are well situated in larger frames of her values that both contribute to her identity.

• Lack of knowledge about the patients’ spiritual ideas• Preconceptions about roles and responsibilities in

decision making: the autonomous patient

CONCLUSIONS

• WTD refer to a complex and dynamic process of coming to terms with the situation at the end of life.

• A WTD is not a simple, clearly circumscribed statement, but contains elements, sometimes several partial wishes that can be in tensions with each other and build a dynamic, sometimes instable equilibrium.  

• These wishes and partial wishes are represented in narrative story-lines that can run in parallel and are not always integrated in a coherent overall life story.

• WTD contained various sometimes contradictory wishes and ideas that were continuously valued against each other.

CONSIDERATIONS FOR PC PRACTICE

• WTD should neither be taken for their „face-value“, nor believed to be simply „resolvable“ by the right treatment or care measures.

• To be abel to respond adequately, WTDS have to be understood within the broader perspective of the overall life-narratives of the patient and the relations he or she lives in.

• This cannot be done from an „external perspective“, but only through a dialogical process together with the patient.

• Self-reflection on ones own concepts and moral understandings is required.

THANK YOU!

Thank you!