I am not afraid to die. I just don't want to be there when it happens Woody Allen

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2 I am not afraid to die. I just don't want to be there when it happens Woody Allen

3 August 14 8 am ER= the day starts Chief: How was your night? Attending: I am exausted. 35 admissions tonight!!!!!! 1 guy was stubbed 2 drug overdoses few CPE Several patients with white codes, basically they did not wanted to queu in the GPs office! Oh yes! I forgot. One 74 years old man with ALS, I think you know him. The third admission in 15 days. This time he came for dyspnea. Same old story. How can he got dyspnea since he lives under MV?. Blood gases are also not so bad (PaO2/FiO2=162 ph= 7.33 PaCO2= 53 mmhg)!

4 Chief: who is he? May be Mr.Brambilla? Oh my God, oh nooo I think he lives alone with badante (foreigner caregiver) and she does not manage to help him any longer The Intensivists were very clear: no space for any further therapy. I called last time dr. Malasorte (Bad Luck), he said that their unit is so busy. Indeed the patients was already very clear NO intubation Attending: The palliative care unit may be... Chief: What? No way, dr.becchini (dr. Graveyard) was telling me that their waiting list is so long and you know they claim that they can deal with pain, but for dyspnea there is nothing they can do

5 Chief: Any idea? Attending: We may call the Pulmonologists and claim that we have an ALS stable patient under NIV. How long ago did he change the interface? Chief: I do not know, may be 3 months ago Attending: So, easy enogh. He only needs a supervised change of the interace, that s why he has dyspnea! Chief: Brilliant! I will propose you for promotion. It is not by chance that your family name is Volponi (Foxy)!

6 Ethical (?) problem 1. Do not waist money 2. Do not consume health care resources 3. Do not let people suffer 4. Do not unduly delay the time to death 5. Respect the patient wishes and willing

7 (World Health Organization 2002) death

8 Try breathing through a thin straw. With a respiratory disease it s a Fight for every breath you draw. John Huston ( ) 13/05/15 8

9 THE NEEDS OF PATIENTS DYING OF CHRONIC RESPIRATORY DISEASE IN THE COMMUNITY Jones I et Family Practice 2004;21: items were identified : Correct Information Symptoms control Get control of what is happening (E-o-L decision?)

10 Anticipatory Planning in ALS : is it the real-life?

11 the time factor Se riusciamo ad instaurare un rapporto duraturo con i nostri pazienti miglioriamo anche la loro fiducia

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13 Where do you want to die?

14 Comparison Between Home and Hospital as the Place of Death for Individuals With Amyotrophic Lateral Sclerosis in the Last Stages of Illness. Am J Hosp Palliat Care Mar 12. [Epub ahead of print Six patients died at home, and eight died at the hospital. Many sudden deaths were observed among the patients who died at home, whereas pneumonia was often the cause of death in the hospital I have NO conflict of interest for this presentation Minorities, men, and unmarried amyotrophic lateral sclerosis patients are more likely to die in an acute care facility. Amyotroph Lateral Scler Frontotemporal Degener Sep;15(5-6): ,911 patients died of ALS in the United States. Place of death was as follows: home or hospice facility 20,231 (50%), acute care facility (25%), and nursing home (20%). African Americans (adjusted multinomial odds ratio (amor) 2.56, CI ), Hispanics (amor 1.44, CI ), and Asians (amor 1.87, CI ) were more likely to die in an acute care facility

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18 THE NEEDS OF PATIENTS DYING OF CHRONIC RESPIRATORY DISEASE IN THE COMMUNITY Jones I et Family Practice 2004;21: items were identified : Correct Information Symptoms control Relief of burden

19 Symptoms control

20 Requests for euthanasia: origin of suffering in ALS, heart failure, and cancer patients J Neurol Jul;257(7): The most frequently reported reasons for I have NO conflict of interest for this presentation unbearable suffering were: - fear of suffocation and dyspnea (55%) and dependency (29%) in ALS patients - pain (46%) and fatigue (28%) in cancer patients - and dyspnea (52%) and dependency (37%) in heart failure patients.

21 The problem of the pain of breathing (i.e. dyspnea) in terminally ill patients

22 Measuring Quality of Dying and Deaths (QODD) How would you rate this aspect? 0= TERRIBLE 10= ALMOST PERFECT

23 Flow-chart of dyspnea 13/05/15 23

24 What can we do?

25 A systematic review of oxygen and airflow effect on relief of dyspnea at rest in patients with advanced disease of any cause. J Pain Palliat Care Pharmacother. 2004;18(4):3-15 Gallagher R, Roberts D. 5 articles were found to be relevant to the question. These primary studies had small samples and did not have matched or cohort controls, therefore providing only level 4 evidence. There was only a total of 83 patients and the majority of the patients were hypoxic and already on oxygen. This systematic review found low-grade scientific evidence that oxygen improve dyspnea in some patients with advanced disease at rest. However, there is no evidence to identify which patients will benefit from supplemental oxygen.

26 we always figure out the best path to follow, but we always choose the one we are more used to

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28 BUT the PATIENT is ALREADY on NIV!

29 % of patients Dyspnea Palpitations Pain Anxiety Bad sleep other

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35 THE NEEDS OF PATIENTS DYING OF CHRONIC RESPIRATORY DISEASE IN THE COMMUNITY Jones I et Family Practice 2004;21: items were identified : Correct Information Symptoms control Get control of what is happening (E-o-L decision?)

36 DEFINITIONS Withholding : a planned decision not to institute therapies that were otherwise warranted (i.e. intubation, renal replacement therapy, increased doses of vasopressor infusions, surgery, transfusion, nutrition, hydration). Withdrawal: discontinuation of treatments that had been started (i.e decreasing FiO 2 21%, extubation, turning off the ventilator, suspend the vasopressors.) Euthanasia : from eu and θanatos = good death. A doctor intentionally killing a person who is suffereing unbearably and hopelessly at the latter s voluntary, explicit, repeated, well-considered and informed request

37 Witholding

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39 N Engl J Med 1996; 334: Real < 30% A democracy could no any longer survive until the hidden power of TV will be highlighted Karl R.Popper 1994 BAD TEACHER TELEVISION

40 Withdrawal

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42 Withdrawal of invasive home mechanical ventilation in patients with advanced amyotrophic lateral sclerosis: ten years of Danish experience J Palliat Med Feb;15(2):205-9 In all I have cases NO advance conflict directives of interest for for end this of presentation life care, particularly concerning withdrawal of treatment, were discussed before the initiation of IHMV. The median time from initiation of IHMV to the decision to terminate treatment was 22 months (range, 1-35 months). The reasons for requests were for all patients a general loss of "meaning in life.

43 I have NO conflict of interest for this presentation

44 Euthanasia

45 Requests for euthanasia: origin of suffering in ALS, heart failure, and cancer patients J Neurol Jul;257(7): In I The Netherlands, relatively more patients (20%) with amyotrophic lateral sclerosis (ALS) die due to euthanasia or physician-assisted suicide (EAS) compared with patients with cancer (5%) or heart failure (0.5%).

46 Trends and determinants of end-of-life practices in ALS in the Netherlands Neurology Sep 22;73(12): Thirty-one (14.8%) patients died during continuous deep sedation (CDS) in I have NO conflict of interest for this presentation Euthanasia or PAS, but not CDS, were significantly associated with religion not being important to the patient, being more educated, and dying at home. Euthanasia or PAS were not associated with quality of care items or symptoms of depression. Loss of function was similar in both groups. Informal caregivers of patients who died after euthanasia or PAS more frequently reported fear of choking (p = 0.003), no chance of improvement (p = 0.001), loss of dignity (p = 0.02), being dependent on others (p = 0.002), and fatigue (p = 0.018) as reasons for shortening life.

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48 I have NO conflict of interest for this presentation

49 Mr. Brambilla ph= 7.29 PaCO 2 = 71.3 mmhg PaO 2 = 50.4 mmhg room air Denied ICU admission and transferred to our Unit Perfectly competent asks to be supported ONLY with NIV because he wishes to say hallo to his only son and 2 nephews

50 Clinical course DAY I DAY II DAY V FiO 2 21% NIV NIV NIV P a O 2 mmhg P a CO 2 mmhg ph BORG Impossible to contact any relatives even through the Police (on HOLIDAYS!) Died on day VIII without even see any loved (???) ones.

51 Conclusions When is getting dark, too dark to see : Ø Rilief of symptoms is MANDATORY not only from a medical point of view, but also from an ethical poit of view Ø Consider the patients preferences (i.e. control the symptoms, use drugs and/or NIV, organize a home care program to relief their burden) Ø Imagine together their future and TAKE in ADVANCE the right decision about End-of-Life Ø Do not unduly PROLONG life and suffering

52 TALK and LISTEN Hable con ella (( Pedro Almodovar) CONSIDER THE PATIENT S NEEDS Through a glass darkly (Ingmar Bergman) TAKE TOGETHER the DECISION Mar adentro (Alejandro Amenábar) DO NOT PROLONG SUFFERING Les invasions barbares (Denys Arcand)

53 Le scaphandre et le papillon (Julian Schnabel) Johnny got his gun (Dalton Trumbo) Million dollars baby (Clint Eastwood)