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In this chapter a detailed analysis of the spiritual content of the interviews is presented.

Participants will be identified with the same short forms used for the physical needs.

3.5.2.3.9.1 Meaning

Searching for a meaning of the lived experience is a typical spiritual need (quote).

Some participants reported to have found a meaning in their experience of disability and life threatening condition, but this does not mean that they accept it easily. Others stated to believe they can find that meaning in the future.

This patient recognises her difficulties in accepting her condition

PALS7 (woman 60 years old, diagnosed 12 years ago, quadriplegic, disharthric, dyspnoeic, NIV 24\24 by nasal mask that enable her to talk).

P=This doesn’t mean that I accept this disease. I deal with it. I’m sure that I’ll discover the reason for this when I’ll be up there. Because down here I don’t see any reason for this.

This patient was experiencing a strong revision of her life and she felt that the impact of the disease had been so bad for her and her husband that she would have changed her mind about her choices in life if she had known it beforehand.

PPD4 ( woman, age 60, cared for by her husband –CPD4- at home, in DBS) P= if I knew that I was going to fall ill one year after our wedding I wouldn’t have married.

This carer, after having described the psychological difficulties of their younger son in coping with his father disease resulting in deep changes in his behaviour talks about the meaning of such devastating experience for the other familiars and the role of external help

CALS4 is the wife of PALS4 (male, 61, quadriplegic, in a wheelchair, cachectic, severely dyspnoeic in NIV diagnosed 3 years ago)

C=We believe in psychotherapy. For our family it is very important. It is helping my son that is very depressed (…) and it is not easy to have him like that

wandering in the house in that condition. It’s also a matter of spirituality in a sense

Decisions and choices at the end of life can be affected by having found a meaning for what is happening in that experience.

This carers explains that being aware that her husband is likely to die changed her plans about the place of care for her loved one

CMS3 is the wife of PMS3 (male, age 46, blind, quadriplegic, muscular spasticity, fed by PEG),

C= doctors told me that my husband arrived at the end of his life. For this reason they wanted me to place him in a nursing home because I wasn’t going to

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be able to manage him at that stage, at home. I said:” What? I’ve cared for him for years alone and now that you say that he’s at the end I should park him somewhere else? Absolutely not! We’ve never been divided except for the short time when I had surgery. I’ll take care of him in our home.

There were contrasting findings between similar situations that caused completely different decisions. This was particularly clear about end of life decisions. Patients who found a meaning in life even with high disability coped well with choices who prolonged their life in spite of higher disability. Some would do the same choices again, some do not want to consider it. All these choices hide different meanings deeply found by participants in their lives when physical conditions dramatically change.

This citation is from a ALS/MND patient who was tracheostomized in emergency for a respiratory arrest even though he had previously refused this option. Following this decision he is happy and would do it again. His wife is very supportive of his choice despite the high burden of care that she as to face.

PALS1 (male 48 years old, bedridden quadriplegic, totally aphonic, tracheostomized.) and CALS1, his wife

P= well, I think I’m lucky because my disease is stable.

I= would you consent again to the tracheostomy?

P= yes.

I= do you mean it’s worthwhile living like this?

P= yes

C= my idea is that living is always worthwhile. I can’t accept the idea of dying.

(….) my opinion is that life must be lived in any condition. This is true only if you’re conscious, because if you’re not others will have to decide for you.

In contrast another patient with the same diagnosis decided not prolong his life because he could not find a meaning in his life in that condition.

PALS3 (male, age 60, on a wheelchair, severely dyspnoeic, diagnosed 5 years ago. In NIV at home) and his wife CALS3.

P= I don’t want tracheostomy. That is not life.

(…)

P= everyone can think what prefer. I don’t want to suffer for these things.

Please, let’s give a blow, I don’t want to suffer more.

Another patient reports the same decision and his wife talks about their concern not to be respected in their decision.

PALS4 (male, 61, quadriplegic, on a wheelchair, cachectic, severely dyspnoeic in NIV diagnosed 3 years ago) and his wife CALS4

P= now I state that I don’t want to be tracheostomized, but the neurologist told that even if a prepare a living will it might not be respected by a doctor if I were took to an intensive care unit, in case of emergency.

C= I think I’d like that every person could decide freely about his end of life decisions.

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This patient gave his consent to tracheostomy and mechanical ventilation, but he says that sometimes he thinks to withdraw it. Having found a meaning in his actual life he endures in his decision to stay alive

PALS6 ( male, age 50, diagnosed 13 years ago, tracheostomized, bedridden – wheelchair, quadriplegic, aphonic)

P=Sometimes I wonder, without finding any answer: “ there is more courage in living or in dying?” if euthanasia were legal perhaps… but then not, I can’t and I don’t want to quit.

This very religious woman thought a lot about the decisions at the end of life. She was considering tracheostomy and PEG at the time of the interview because her breathing and swallowing were both deteriorating quickly. Asked about these decisions and the implication of the meaning in her choices she said:

PALS7, (woman 60 years old, diagnosed 12 years ago, quadriplegic, dysharthric, dyspnoeic, NIV 24 hours a day)

P= I read the letter written by Cardinal Martini and I found it wonderful because, talking about heroic treatment, he says that:” don’t allow a person to reach the end of his life means refuse his or her meeting with the Father that is waiting for him or her.” And that’s true. Everyone of us has its own time

She wanted to comment about the discussion that was on the news on those days in Italy about the request of a tracheostomized ALS/MND patient to withdraw his mechanical ventilation and to die peacefully. She commented about the meaning of that decision stating that it was morally correct because that man fought with all his energy against the disease, but at the end his suffering became meaningless:

I think that Welby’s case, the ALS patient who died when his doctor sedated him and switched off his ventilator and is under a trial for euthanasia, shouldn’t be considered euthanasia because a man who lived 20 years communicating with the eyes, tracheostomized, with a PEG, showed a strong attachment to life. If then, in spite of his invasive ventilation, he had apnoeas and suffered for breathlessness this means that his body couldn’t go on anymore…. So let’s unfurl the sails!

Finding a meaning can be described as the sense of completeness of one owns life as testified by this patient

PMS4 (71 years old woman diagnosis 42 years ago. Paraplegic, wheel chair bound, lives alone helped by paid carers)

P= What I cannot accept is therapeutic heroism, overtreatment. If necessary I’ll state it on a written form. It’s useless, it just prolong absurd suffering, delusions.

This is what I think.

(…)

My respiratory tests were totally unsatisfactory, but I refused mechanical ventilators. I’ve had enough, I lived my life.

3.5.2.3.9.2 Injustice

When the sense of meaning cannot be found a sense of injustice about what is happening to affect patients and families.

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Sometimes it appears under the form of a recrimination towards God or the fate when participants feel not to deserve their conditions

PMS1 (male, age 53, diagnosis of MS 18 years ago, quadriplegic, using NIV in the night)

P=I’ve never hurt anyone and I’m not even able to swear… and that’s the nice. I never swear, I store all inside, also pain, and the is the way they pay me back.

This patient has been affected by MS for decades and is actively involved in the local MS patients association. She stated that she accepted her conditions, but she feels unfair to see younger people facing worsening disability without having the possibility to stop it.

PMS4 ( woman, 69 years old, diagnosed 42 years ago, quadriplegic, living alone)

P= we have so many young people affected by this disease in our association.

Boys that didn’t receive anything in this life.

Injustice is also described as the lack of reward for having lived a socially correct life, with the expectation to enjoy serene years after retirement.

PALS3 (male, age 60, on a wheelchair, severely dyspnoeic, diagnosed 5 years ago. In NIV at home)

P= I worked 37 years and never asked for sick-leave. (…) can you imagine 37 years without a single day of sick-leave? Then I retire, I was so well.. and now this. I cannot accept this, no way!

Having to struggle to obtain what participants thought to have the right for evoke another sense of injustice. This patient feels he has the right to obtain an electronic communicator and wrote a letter to the Health District manager complaining about the refusal that he had received. He uses a metaphoric expression to state his sense of injustice for not having had his need satisfied because he politely avoided to quarrel with the involved office.

PALS6 (male, age 50, diagnosed 13 years ago, tracheostomized, bedridden – wheelchair, quadriplegic, aphonic)

P=Unfortunately I learnt that in some people’s life I’d rather enter and exit on the tip of the feet.

A further cause of injustice can be caused by the sense of guilt that is well explained in the interaction between this patient’ wife and her daughter

CMSA1 wife of PMSA1 a gentleman 73 years old, diagnosed 4 years ago.

Bedridden with muscular rigidity and serious communication impairment.

DSMA1 their daughter

C= when you have to face with experience like this one .. life changes so much.

You don’t have time for yourself.

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D= she could have time if she let us help her. But she doesn’t permit to be helped because if she saves some time for her then she feels guilty and she feels like if this was unjust.

3.5.2.3.9.3 Hope

The spiritual meaning of hope can be seen as having the hope to improve ones own physical condition.

PALS2 (male, age 39, tracheostomized, quadriplegic, diagnosed 14 years ago, totally aphonic) and his wife CALS2.

P= the only thing that really support me is hope. I hope to recover. Is the hope that one day they’ll find a cure for me. Is this a visionary hope? Well it helps to boost my morale!

Hope can also be an attempt to justify strange decisions, such as in the following example where this couple went twice to China for a stem cells transplantation (that did not provide any improvement) against the neurologist’s advice

PALS4 (male, quadriplegic, on a wheelchair, cachectic, severely dyspnoeic in NIV diagnosed 3 years ago) and his wife CALS4.

P= what did I have to lose?

C= no one could offer him alternatives.

Lack of hope can lead to desperation and confusion

PMS1 (male, age 53, diagnosis of MS 18 years ago, quadriplegic, using NIV in the night)

P=After so many years of my disease I don’t know what to hope, what to think, what to say, what to do.

Hope can be seen as the opposite of acceptation

PMS4( 71 years old woman diagnosis 42 years ago. Paraplegic, wheel chair bound, lives alone helped by paid carers)

P= these are MS realities: It’s useless to have hope. You just have to accept.

Carers can experience frustration when they feel that their loved one lost his or her hope and do not fight against the disease.

CMS6 wife of PMS6 a 53 years old gentleman EDSS 9, fed by PEG, almost totally dependent in the ADL

C=He really speaks very little. It’s due to the disease. I try to scold him, to stimulate him because he let himself go. He doesn’t react as others do. It’s like if he said:” I’m ill and it’s fine, let me stay”. I don’t like it, it’s like if he lost his hope.

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3.5.2.3.9.4 Rage and Control

When asked about their spiritual feelings evoked by the experience of disease interviewees talked about the rage and the loss of control caused by the disease.

PPD2 (male, age 70, fluctuating motor symptoms with freezing episodes alternate to severe dyskinesias)

P=I become angry with the Chief Clerk who stays over there (meaning God) and I tell him: “ Please look on another side, is it possible that you always have to look here!”

PMS1 (male, age 53, diagnosis of MS 18 years ago, quadriplegic, using NIV in the night) P=It looks like I’m the only crucified here! I’ve always been correct with the other people, polite with everyone. This is the way I’m paid back.

Relentlessness of the disease progression cause rage and affects the coping strategies of the families.

PMS2 (male, age 43, quadriplegic, can only move his neck, totally dependent in ADL), CMS2 his wife.

P=It’s because of all that happens to you. When you say, come on perhaps we can breathe a little, we can have a break, suddenly something worst happens!

Rage can be the strength enabling patients’ to go on in life as testified by this patient who gave us part of a letter that he wrote with the computer to the NHS manager who should approve his application for a new computer based communicator

PALS6 (male, age 50, diagnosed 13 years ago, tracheostomized, bedridden – wheelchair, quadriplegic, aphonic)

P= “I know I’m a load for everyone, but what can I do? My disease takes away everything: strength, voice and dignity. I can’t recover, but help me to survive.

According to statistics I should have been dead a long ago. But I have a strength and a rage inside that I could smash the world.”

Rage can also be a symptom of frustration for being stuck in a wheelchair and totally dependent on the others.

PMS4 (female, 69 years old, diagnosed 42 years ago)

P= for the family you’re just a heavy load. This is the dark thing, this is the thing that makes me curse, swear.

The importance of being in control of what will happen and to maintain autonomy in decisions can be associated with the sense of frustration reported by participants about the potential loss of this aspect of life.

PALS7 (woman 60 years old, diagnosed 12 years ago)

P= about living will I agree but: it must be done when I am very close to a decision. I can’t state now about issues that will happen in 10 years. Then it’s an absurd that to do this you have to go to a notary.

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PALS4 (male, 61, quadriplegic, on a wheelchair, cachectic, severely dyspnoeic in NIV diagnosed 3 years ago) and his wife CALS4

P= now I state that I don’t want to be tracheostomized, but the neurologist told that even if a prepare a living will it might not be respected by a doctor if I were took to an intensive care unit, in case of emergency.

C= I think I’d like that every person could decide freely about his end of life decisions.

3.5.2.3.9.5 Faith, religion and love

Spirituality and religiousness are not synonymous. Love is often described as the main characteristic of God and has a profound religious meaning. Participants talked about these themes highlighting their different feelings and position about these issues.

This patient totally impaired in his speech, showed us this prayer that he wrote on his computer to express his faith

PALS5, male in his 70ies, quadriplegic, aphonic, on a wheelchair. he tries to communicate using a computer keyboard. Very slow. He is a retired doctor)

P= “ Faith to me is the pursuit in the fatigue, in the dark of doubt. I don’t believe in sudden flashes, in the graces meant as miracles. Doubt, discount, light. Grace is for very few on Damascus road. My Lord, this is not the time to search the reasons for faith. Highest Grace is abandon myself in You. Total trust in your hands, my Lord. To live in daily precariousness with my angels and in Your Love”

And this woman talks about the importance to have faith and how she can justify what happens in life, find a meaning, because she believes in God’s plans

PALS7, (woman 60 years old, diagnosed 12 years ago, quadriplegic, dysarthric, dyspnoeic, NIV 24 hours a day)

P= faith helps in the important things of life. This was our lives journey. I’ve never thought to be immune from illnesses. I had friends who died of cancer, 2 sons of our friends died for car accidents… nobody was born with guarantees.

(and talking about withdrawing vital support treatment)

P=I think that is a way to say: let me go up there, because up above someone is waiting for me.

This couple is very religious and found a deep support in their faith. The patient was not able to talk, but he strongly wanted to testify his faith and agreed with his wife statement

PMS7 (Male, age 73, diagnosed 25 years ago. Wheelchair bound, anarthric) CMS7 his wife.

C= after diagnosis my husband put his life in Our Lord’s hands.

(….)

C= I try to explain my husband’s point of view about the meaning of this disease and relationship between spirituality and this experience, I’ll ask him to confirm or not if this is correct: in the beginning of the disease he said – I’ll never ask to

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Our Lord to heal me, because if he wants to he does it anyway. If he gave this disease it must be of use for something or someone

Faith is not always seen as having a positive impact on participants’ experiences.

PMS2 (male, age 43, quadriplegic, can only move his neck, totally dependent in ADL), CMS2 his wife.

C= We are believing, but… sometimes you ask yourself if you have to believe or not…

CMS6 wife of PMS6 a 53 years old gentleman EDSS 9, fed by PEG, almost totally dependent in the ADL

C= we used to attend the church. Now he doesn’t feel like going anymore. Once two priest of our parish came for dinner, it was nice. But then they changed and we didn’t have the chance to meet the new ones.

3.5.2.3.9.6 Religious support

Support provided by priests or other religious assistance was very well accepted and recognized as positive by a part of our participants and refused or not seen as useful by others.

This can be affected by having been religious persons (or not) before the experience of the disease, but also by the possibility of being supported by someone who can or is supposed to provide religious support. The following citations testify how good relationships with religious professionals result in a good spiritual support during the disease.

PPD1 (male, age 80, cognitively slow but able to understand and severely disabled in his movements. During the interview was admitted in the

PPD1 (male, age 80, cognitively slow but able to understand and severely disabled in his movements. During the interview was admitted in the

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