Human Dignity and End of Life – Part 2: The End of Life and Medical Science

Ljudsko dostojanstvo i kraj života – 2. dio: Kraj života i medicina

This is a second in the series of three articles titled “Human Dignity and the End of Life”.

If the role of the society is making the world a warmer, more humane and secure place, then the medical profession has an even more specific role in caring for people at the end of life. The foundations of medicine inscribed in the Hippocratic Oath (4th century BC) have clearly defined the deontology, or moral logic, and ethics of medical professionals, as well as their relationship with the patient.  The role of medicine is to protect and preserve patients’ lives, work on research and disease prevention to help people live as healthily as they can. Also, healthcare professionals should respect patients’ rights in accordance with medical ethics and deontology aiming to ensure physician-patient relationship so each individual could be certain that one day they will be provided with the best possible medical therapy and care. Helping the most vulnerable in medicine is done within palliative care, and also by many researches and applications of the latest methods in treating life-threatening diseases, such as treating various forms of cancer by CRISP method, as well as restoring function by transplanting or generating new tissue, such as generating cartilage tissue through 3D bioprinting.

The end of human life is a special test for physicians due to the conditions of patients with different and increased difficulties, along with the need to be accepted, understood, helped and affirmed in their own dignity. The patient, who is fully reliant on medical procedures, should sense professional competence from and humane acceptance by healthcare professionals. The most responsible ones within the medical world are faced with a demand to adopt the basic belief according to which a patient is not a reality which should be treated as a non-living thing, but instead as a sick person who needs to be treated, having the same dignity as the one whom that person is treated by.

Pierluigi Marchesini, reflecting on his experiences providing end of life care said: “We… have become so accustomed to illness and the sick person, to become so used to him so as to erect a barrier not only to his very being but also to our own effectiveness… Therefore  man is stripped not only of his clothes but of his very being—this man present here with his problems, with his history, in this situation of his being just a subject, and one makes him put on a pair of pajamas that represents the clinical case and the sick organ.

Modern medicine’s approach to end of life care can be best examined through two common forms: palliative care and euthanasia, or assisted suicide and other ways of intentionally ending life.

Palliative care is active and comprehensive (physical, psychological, spiritual) care with the aim of raising life quality, as well as removing pain and symptoms of illness. Palliative care is medical care for every person regardless of age, situation and phase of the disease, whether it is a curable, chronic, or life-threatening. It does not imply extending life at all costs, which is contrary to human dignity, but accompanying the patient during illness and to the natural end of life. Palliative care is performed by a team of physicians, medical staff and other professionals, most commonly in hospice, hospitals or home care.

Palliative care developed its roots in England through to a number of professionals including Cicely Saunders, founder of the first modern hospice, St. Christopher’s Hospice, in 1967. She launched a series of positive changes in the hospice establishment and palliative institutions in countries around the world, including in my country, Croatia.

Croatia’s experience demonstrates ways in which hospice care can be incorporated into national healthcare frameworks and society. The organizational and legal framework for palliative care in Croatia is regulated by several documents,[2] and the progress of the National Program for Palliative Care Development in the Republic of Croatia 2017-2020 is ongoing. Palliative care is actively carried out by the Ministry of Health in Duga Resa, Novi Marof, and Strmac hospitals, Marija Krucifiksa Kozulić hospice in Rijeka, specialized palliative care departments such as the Department of Pediatric Intensive Medicine of KBC Zagreb, Rebro, and other institutions. Croatian non-governmental organizations such as Croatian Association to Help the Terminally Ill, Croatian Society for Hospice and Palliative Care and the Mobile Palliative Care Unit of the Secular Franciscan Order represent examples of positive actions of individuals and volunteers that need to be supported because they, through their concrete actions, make society more humane and go hand in hand with the world trends in palliative care.

On the other hand, the practice of euthanasia in medicine entails confusion at several levels: in terminology,[3] by , and by claiming the medical profession cannot by its help meet the patients’ needs.[4] There are certain differences between assisted suicide and euthanasia: assisted suicide consists of providing the means of suicide to the one who wants to commit suicide, while the act of using a deadly substance, with the purpose of causing death, is carried out by the person concerned. Euthanasia implies an active act (sometimes omission[5]) committed by another person with the purpose of causing death. These differences are sometimes difficult to distinguish in practice, but what they have in common is the act of ending the life of another person, guided by “compassion” and aiming to end intolerable suffering. The logic of assisted suicide actually leads towards euthanasia, because if we understand “compassion” as assistance in killing, it is pointless to argue that assisting in suicide is reserved only for those who are able to inject the lethal substance on their own—or only for those who request assistance to end their lives.

Euthanasia contradicts everything that physicians do, healing and caring for the sick and suffering, and therefore runs contrary to the medical profession. Dr. Leon Kass explains the removal of the necessary precondition of serving society: “Causing nonexistence is incompatible with the care for integrity: one cannot heal—or comfort—by making nothingness. The healer cannot annihilate if he is truly to heal.” Euthanasia also disrupts the physician-patient relationship by allowing the means for treating illness and preserving life to be used for killing. The physician-patient relationship is the foundation of trust which society invests in healthcare professionals and a prerequisite for successful treatment. International medical organizations argue that the practice of euthanasia is fundamentally incompatible with the fundamental values of the medical profession, which is clearly reflected in the World Medical Association Declaration on Euthanasia:

Euthanasia, that is the act of deliberately ending the life of a patient, even at the patient’s own request or at the request of close relatives, is unethical. This does not prevent the physician from respecting the desire of a patient to allow the natural process of death to follow its course in the terminal phase of sickness.

Physicians are needed to heal and provide care, which is the minimum ethical standard of the medical profession. The act of euthanasia is incompatible with physician’s role as healer, as we understand it from time immemorial. To intentionally take away a person’s life is an intrinsically wrongful act. Physicians should, therefore, be focused on a holistic approach to the patient, such as through palliative care at the end of life.

 

[1] P. Marchesi, Umanizzazione, Centro Stampa Fatebenefratelli, Rome, (1983), 58, 60.

[2] National Strategy for Health Care Development 2012 – 2020, White Paper on standards and norms for hospice and palliative care in Europe, Strategic Plan for Palliative Care Development in the Republic of Croatia for the period 2014 – 2016

[3] Distinction of certain forms of intentional life shortening in reality is very difficult and concepts such as “death with dignity” in literature suggest that only the right to end one’s own life ensures dignity at death, rather than recognizing that dignity is the value each human being has regardless of any characteristic or circumstance.   

[4] Human life is sometimes misunderstood as having no internal value, and the patient is instead of viewed as a whole, often viewed exclusively through illness or disease affected organ. Also, a human person becomes the scene of violations and disrespect for human rights by a several stakeholders.

[5] Death caused by omission is defined as a passive euthanasia.

 

Ako je uloga društva svijet učiniti toplijim, ljudskijim i sigurnijim mjestom, još specifičniju ulogu i podršku čovjeku na kraju života ima medicina. Temelji medicine upisani još u 4. st. pr. Kr. Hipokratovom zakletvom jasno su odredili deontologiju i etiku medicinske struke te odnos liječnika prema pacijentu. Uloga je medicine zaštititi i očuvati život bolesnika, raditi na istraživanjima i prevenciji bolesti kako bi povećala kvalitetu života svakog pojedinca. Također, zadaća je zdravstvenih djelatnika poštovati prava pacijenata u skladu s medicinskom etikom i deontologijom u cilju osnaživanja odnosa liječnik-pacijent kako bi svatko bi siguran da će mu jednog dana biti pružena najbolja medicinska terapija i njega. Pomoć najugroženijima medicina obavlja u sklopu palijativne njege, ali i mnogim istraživanjima i primjenama najnovijih metoda u liječenju po život opasnih bolesti, kao što je tretiranje različitih oblika raka CRISP metodom te podizanjem kvalitete života transplatacijama ili generiranjem novih tkiva, kao što je generiranje tkiva hrskavice putem 3D bioprintinga.

Kraj ljudskog života poseban je test liječnicima zbog stanja pacijenta s povećanim poteškoćama, s potrebom da bude prihvaćen, shvaćen, pomognut i afirmiran u vlastitom dostojanstvu. Pacijent, koji se u punom povjerenju prepušta liječničkim zahvatima, u zdravstvenim djelatnicima treba vidjeti profesionalnu kompetentnost i humano prihvaćanje uz poštovanje. Pred najodgovornije u svijetu medicine stavlja se zahtjev usvojiti temeljno uvjerenje kako bolesnik nije stvarnost na koju valja reagirati kao što se reagira na neživi organizam, već bolestan čovjek kojega valja liječiti te osoba koja posjeduje jednako dostojanstvo kao i onaj koji ga liječi.

Pierluigi Marchesini je, reflektirajući o iskustvu vlastita rada kao zdravstvenog djelatnika, o kraju života rekao sljedeće: „Do te mjere smo se navikli na bolest, da smo se navikli i na bolesnika; time nismo u mogućnosti upoznati bolesnika što se odražava i na našu učinkovitost. Tako bolesnik ne biva razodjenut samo od svoje odjeće već i od svoje subjektivnosti i konkretnosti; pacijent više nije ovaj čovjek ovdje, sa svojim problemima i svojom poviješću, u ovoj situaciji – već mu se daje pidžama kliničkog slučaja, te ga se promatra kroz oboljeli organ.”[1]

Pristup moderne medicine kraju života vidljiv je u 2 najčešća oblika: palijativna skrb i eutanazija, odnosno potpomognuto samoubojstvo i s njima povezani drugi oblici namjernog prekida života.

Palijativna je skrb aktivna i sveobuhvatna (fizička, psihološka, duhovna) skrb s ciljem podizanja kvalitete života, uklanjanja boli te svih simptoma bolesti. Palijativna skrb medicinska je skrb za svaku osobu bez obzira na dob, situaciju i fazu bolesti, bilo da se radi o izlječivoj, kroničnoj ili po život opasnoj bolesti. Ona u sebi ne podrazumijeva produljenje života pod svaku cijenu što je protivno ljudskom dostojanstvu, nego prati bolesnika do prirodnog kraja života. Palijativnu skrb omogućuje tim liječnika, medicinskog osoblja te drugih stručnjaka, a najčešće se pruža u okruženju hospicija, u bolnicama i kućnoj njegi.

Palijativna skrb svoje je korijene razvila u Engleskoj zahvaljujući brojnim profesionalcima među kojima je i Cicely Saunders, osnivačica prvog modernog hospicija St. Christopher’s Hospice iz 1967. godine, koja je pokrenula niz pozitivnih promjena osnivanjem hospicija i palijativnih ustanova u državama diljem svijeta, od kojih je jedna i Hrvatska. Organizacijski i pravni okvir palijativne skrbi u Hrvatskoj reguliran je pomoću nekoliko dokumenata,[2] a u tijeku je razrada Nacionalnog programa razvoja palijativne skrbi u Republici Hrvatskoj 2017. – 2020. godine. Palijativna skrb se u sklopu Ministarstva zdravstva Republike Hrvatske aktivno provodi u bolnicama u Dugoj Resi, Novom Marofu, Strmac (pored Nove Gradiške), hospiciju „Marija Krucifiksa Kozulić“ u Rijeci, specijaliziranim odjelima za palijativnu skrb, kao što je Odjel za pedijatrijsku intenzivnu medicinu KBC-a Zagreb, te nekim drugim ustanovama. Inicijative udruga „Pomoć neizilječivima“, „Hrvatsko društvo za hospicij i palijativnu skrb“ te „Mobilni tim za palijativnu skrb Franjevačkog svjetovnog reda“ primjer su pozitivnih akcija pojedinaca i volontera koje treba podržati jer društvo, po svojim konkretnim djelima, čine humanijim i idu u korak sa svjetskim trendovima palijativne skrbi.

S druge strane, praksa eutanazije u medicini unosi zbrku na nekoliko razina: u terminologiji,[3] u negiranju napretka medicine u terapiji boli i palijativne skrbi, kao suprotnost liječničkoj profesiji, kao neadevatan pristup pacijentu.[4] Između potpomognutog samoubojstva i eutanazije postoje određene razlike: potpomognuto samoubojstvo podrazumijeva pružanje sredstva za samoubojstvo osobi koja želi počiniti samoubojstvo, a čin unošenja smrtonosne tvari vrši dotična osoba s ciljem uzrokovanja smrti. Eutanazija podrazumijeva aktivan čin (ponekad i propust[5]) kojeg vrši druga osoba s ciljem uzrokovanja smrti. Ove razlike se u praksi ponekad teško razlikuju, a zajedničko im je da su djela usmrćenja drugoga vođena „suosjećanjem“ i ciljem uklanjanja nepodnošljivih patnji. Logika potpomognutog samoubojstva zapravo vodi eutanaziji, jer ako „suosjećanje“ shvatimo kao da ono podrazumijeva pomaganje u ubijanju, besmisleno je tvrditi da je potpomognuto samoubojstvo rezervirano samo za one koji si smrtni „lijek“ mogu ubrizgati samostalno.

Eutanazija je u suprotnosti s medicinskom profesijom jer je proturječan postupak svemu onome što liječnici rade: zbog liječenja pacijenta i održavanja doktor-pacijent odnosa, život biva prekinut, a odnos uništen. Uklanjanje neophodnog preduvjeta pri služenju društvu dr. Leon Kass objašnjava: “Prouzrokovati nepostojanje nespojivo je s brigom o cjelovitosti: ne može se liječiti – ili tješiti – čineći ništavnost. Liječnik ne može uništavati ako doista želi liječiti.“ Eutanazija također narušava odnos liječnik-pacijent dozvoljavajući da sredstva namijenjena liječenju i očuvanju kvalitete života budu korištena u svrhu ubijanja. Odnos liječnik-pacijent temelj je povjerenja kojeg društvo ulaže u medicinsku struku i preduvjet posvećenosti liječenju pacijenata. Medicinske organizacije diljem svijeta ujedinjeno tvrde kako praksa eutanazije nije u temeljnom skladu s medicinskom profesijom, o čemu se jasno očitovala World Medical Association u dokumentu “Deklaracija o eutanaziji”:

Eutanazija je, kao čin namjernog okončavanja života, čak i na zahtjev pacijenta ili zahtjev bliskih srodnika, neetična. Ona ne sprječava liječnika da poštujući želju pacijenta, dopusti prirodnom procesu smrti djelovati i kroz završni stadij života.

Liječnici su potrebni kako bi liječili i pružali skrb što je minimalan etički standard medicinske struke. Čin eutanazije nespojiv je s ulogom liječnika koju poznajemo već dulje od dva tisućljeća. Namjerno oduzimanje života osobi intrizično je nemoralan čin. Liječnici bi stoga trebali biti usmjereni na cjelovit pristup pacijentu kakav nalazimo u palijativnoj skrbi.

 

[1] P. Marchesi, Umanizzazione, Centro Stampa Fatebenefratelli, Rim, (1983.), 58, 60.

[2] Nacionalna strategija razvoja zdravstva 2012. – 2020, Bijela knjiga o standardima i normativima za hospicijsku i palijativnu skrb u Europi, Strateški plan razvoja palijativne skrbi u RH za razdoblje 2014. – 2016.

[3] Razlikovanje pojedinih oblika namjernog skraćivanja života u stvarnosti vrlo je teško, a pojmovi, poput dostojanstveno umiranje, u literaturi nerijetko zauzimaju kontrarna značenja.

[4] Ljudski život se ponekad pogrešno shvaća kao da nema unutrašnju vrijednost, a pacijent se umjesto kao cjelina, često promatra isključivo kroz bolest ili bolešću zahvaćen organ. Također, ljudska osoba postaje poprište kršenja i nepoštivanja ljudskih prava od strane nekoliko dionika.

[5] Smrt uzrokovana propustom definirana je kao pasivna eutanazija.

 

Written by Luka Poslon, head of the Bioethics Team of WYA Croatia