EDITORIAL

ANIP’s position on the proper advancement of the palliative care concept in Romania and on the unified and comprehensive development of services at the national level

 Poziţia ANIP pentru promovarea corectă a conceptului de îngrijiri paliative în România şi pentru dezvoltarea unitară şi comprehensivă a serviciilor la nivel naţional

First published: 18 octombrie 2024

Editorial Group: MEDICHUB MEDIA

DOI: 10.26416/OnHe.68.3.2024.10150

Abstract

This document presents the position of the National Asso­cia­tion for Palliative Care (ANIP) regarding palliative care in Romania. It defines key concepts, outlines the general prin­­ci­ples of palliative care, summarizes the current state of palliative services in Romania, discusses the challenges of in­te­gra­ting these services into the healthcare system, and it of­fers recommendations for improving access to pal­lia­tive care.
 Key points included in the document: 
1. De­fi­ni­tion and scope of palliative care. Palliative care aims to improve the quality of life for patients with life-threatening illnesses, manage pain, and address holistic needs (physical, psycho-emotional, social, and spiritual). Palliative care starts from the moment of diag­no­sis, con­ti­nues throughout the illness alongside the etio­lo­gical treat­ment, and includes support for the family du­ring the pa­tient’s illness and after their death, providing assistance du­ring the grieving period. 2. Misconceptions about pal­lia­tive care. ANIP high­lights widespread mis­con­cep­­tions about palliative care, emphasizing that it is not limited to ter­mi­nally ill patients or those with cancer, but it applies to a broad range of patients with progressive chro­nic diseases. ANIP stresses the need to correct these mis­con­cep­tions through better education and information for healthcare professionals and the general public, in order to understand the benefits of palliative care. 3. Legal and ethical aspects. The do­cu­ment reaffirms ANIP’s firm opposition to euthanasia and assisted suicide, focusing on palliative care as a so­lu­tion for alleviating suf­fering without hastening death. It also supports patients’ rights to be com­­pas­­sionately and honestly informed about their health status and to be involved with their families in planning the care. 4. Current challenges. Despite significant progress over the last decades, palliative care services in Romania are un­evenly developed, with a focus on inpatient palliative units. Home-based and outpatient palliative care services are insufficiently developed. Funding mechanisms are also li­mi­ted, affecting the expansion of services, especially those outside hospitals, in the community. 5. Human resources. Although training courses for doctors, nurses, and other staff specific to interdisciplinary palliative care teams exist, the number of specialized personnel is insufficient. 
6. Re­­com­­men­da­tions. These include improving fun­ding for pal­lia­tive services, developing home-based and outpatient care services, stimulating professional trai­ning (especially in areas with limited or no services), and re-establishing a de­di­ca­ted palliative care committee with­in the Ministry of Health. The document also proposes laun­ching a national aware­ness campaign to increase un­der­stan­ding of pal­lia­tive care and its benefits.
ANIP advocates for recognizing palliative care as a uni­ver­sal human right, ensuring prompt access to these services for all patients in need, regardless of location or financial status.
 

Keywords
palliative care, education, speciality 

Rezumat

Documentul prezintă poziţia Asociaţiei Naţionale de Îngrijire Paliativă (ANIP) cu privire la îngrijirea paliativă în România. Sunt definite conceptele-cheie, principiile generale ale îngrijirii paliative, sunt descrise sumar situaţia actuală a serviciilor de paliaţie din România şi provocările legate de integrarea acestor servicii în sistemul de sănătate, fiind formulate recomandări pentru îmbunătăţirea accesului la îngrijirea paliativă.
Puncte esenţiale incluse în document:
1. Definiţia şi domeniul de aplicare ale îngrijirii paliative. În­gri­ji­rea paliativă are ca scop îmbunătăţirea calităţii vieţii pa­­cien­ţi­lor cu boli ameninţătoare de viaţă, gestionarea durerii şi abor­darea nevoilor holistice – fizice, psihoemoţionale, so­cia­le şi spirituale. Îngrijirea paliativă începe de la momentul di­ag­nos­ti­cului, continuă pe tot parcursul bolii, în paralel cu tra­ta­men­tul etiologic, şi include suportul acordat familiei în pe­rioa­da bo­lii pacientului, precum şi după decesul acestuia, ca spri­­jin în pe­rioada de doliu. 2. Percepţii greşite referitoare la în­gri­ji­­rile paliative. ANIP atrage atenţia asupra confuziilor larg răspândite despre îngrijirea paliativă, subliniind că aceas­ta nu este limitată la îngrijirea pacienţilor în stare ter­mi­na­lă sau a celor cu cancer, ci se aplică unor categorii largi de pacienţi cu boli cronice progresive. De asemenea, ANIP evidenţiază ne­ce­si­ta­tea de a corecta aceste concepţii greşite, printr-o mai bu­nă educare şi informare a profesioniştilor din sănătate şi a pu­­bli­cu­lui, pentru a înţelege beneficiile îngrijirii paliative. 
3. As­­pec­­te legale şi etice. Documentul reafirmă opoziţia fer­mă a ANIP faţă de eutanasie şi suicidul asistat, concentrându-se pe îngrijirea paliativă ca soluţie pentru ameliorarea suferinţei, fără a grăbi moartea. De asemenea, susţine drepturile pa­cien­­­ţi­lor de fi informaţi cu compasiune şi onestitate despre sta­­­rea lor de sănătate şi a fi implicaţi împreună cu familia în pla­­­ni­fi­ca­rea îngrijirii. 4. Pro­vocări actuale. Deşi au avut loc pro­­gre­se importante în ultimele decenii, serviciile de îngrijire pa­lia­tivă sunt dezvoltate inegal în România, cu o concentrare pe in­ter­na­rea în secţii de paliaţie. Serviciile de îngrijiri paliative la domiciliu şi în ambulatoriu sunt insuficient dezvoltate. Me­ca­nis­me­le de fi­nan­ţa­re sunt, de asemenea, limitate, afectând ex­tin­de­rea ser­vi­cii­lor, în special a celor din afara spi­ta­lu­lui, în co­­mu­­ni­­ta­te. 5. Re­surse umane. Deşi există cur­suri de for­ma­re pen­tru medici, asistenţi me­di­cali şi alt per­so­nal specific echi­pe­lor in­ter­dis­ci­pli­nare de îngrijiri pa­lia­tive, numărul personalului spe­­cia­­li­zat este insu­fi­cient. 6. Recomandări. Acestea includ îm­­bu­­nă­­tă­­ţi­rea fi­nan­ţă­­rii serviciilor de paliaţie, dezvoltarea ser­­vi­­cii­lor de îngrijire la domiciliu şi în ambulatoriu, stimularea for­­­mă­­rii pro­fe­sioniştilor (cu precădere în zonele cu servicii li­­­­mi­­­­­ta­­­te sau fără servicii) şi re­în­fiin­ţa­rea unei comisii de­di­ca­te în­­gri­ji­rii pa­lia­tive în cadrul Ministerului Sănătăţii. Do­cu­men­tul propune, de asemenea, lan­sa­rea unei campanii na­ţio­na­le pen­tru creşterea con­şti­en­tizării asupra îngrijirilor pa­lia­tive şi a be­ne­fi­cii­lor aces­to­ra.
ANIP pledează pentru recunoaşterea îngrijirii paliative ca un drept universal al omului, asigurând accesul prompt la aceste ser­vi­cii pentru toţi pacienţii care au nevoie, indiferent de locaţie sau de statutul lor financiar.
 

The National Association for Palliative Care (ANIP) expresses its concern regarding the negative impact of recent events on Romania’s healthcare system, including unfounded and inaccurate opinions in the media coverage about palliative care. ANIP emphasizes the need for professionals to clarify the fundamental concepts of palliative care and to highlight the importance of this field in the care of patients with progressive chronic diseases.

I. What IS palliative care

Palliative care is an approach that improves the quality of life for patients (both adults and children) and their families facing problems associated with life-threatening diseases. This is achieved through the prevention and relief of suffering by early identification, accurate assessment, and appropriate treatment of pain and other physical, psychosocial and spiritual issues(1). Care begins at the time of diagnosis and continues throughout the course of the illness, regardless of whether the patient is receiving treatment aimed at curing the illness, and also after the patient’s death, as support for the family during the grieving period.

In Romania, over the past three decades, palliative care services have developed unevenly across the country, starting with initiatives from nongovernmental organizations and later integrated into both public and private healthcare systems. Currently, these services are primarily focused on admitting patients to dedicated inpatient units (autonomous palliative care units or wards in public or private hospitals), while home care and outpatient services remain insufficiently developed. Home palliative care is provided exclusively through charitable organizations or private services. Consequently, access to these services is limited and often inadequate, with uneven national coverage. According to current(2) publicly available information, the number of authorized beds in palliative care wards is about 3300, of which around 3000 are contracted with health insurance funds. Other types of palliative services in outpatient clinics are underdeveloped, with only seven providers of home-based palliative care(3).

Regarding human resources, the 2019 Analysis Report on Providers of Palliative Care Services(4) indicates that there were 610 physicians who completed palliative care competence studies and 483 nurses specialized in palliative care. Other professionals necessary for interdisciplinary palliative care teams (psychologists, social workers, physiotherapists, clergy, and managers) have completed multidisciplinary courses.

Nevertheless, the coverage of palliative care needs at the national level was under 20%, making it imperative to adopt measures for expanding and improving these services. The same report estimates that, in Romania, 176,156 adults and children with advanced chronic or incurable diseases annually require palliative care.

II. What is NOT palliative care

  • Palliative care is NOT limited to a specific disease, as it is often associated with the final stages of cancer, but addresses a wide range of progressive chronic conditions (including nononcological diseases). Of the total beneficiaries of palliative care, approximately one-third are cancer patients, while the remaining two-thirds have various other conditions.
  • Palliative care is NOT provided only after the exhaustion of etiopathogenic treatment, but concurrently along these treatments.
  • Providing palliative care to alleviate difficult symptoms and improve quality of life does NOT mean abandoning the etiological treatment; it can run parallel to it, with palliative care being equally important at this stage of the disease.
  • Palliative care is NOT only for terminal (dying) patients, but is recommended as a supportive intervention from the moment of diagnosis or in the early stages of progressive chronic diseases, alongside active treatments for the underlying disease.
  • Palliative care is NOT limited to managing physical pain, but takes a holistic approach to the complex suffering (physical, psycho-emotional, social, and existential) of incurable patients, involving an interdisciplinary team including at least a physician, nurses, a social worker, clergy and psychologist.
  • Palliative care is NOT to be confused with long-term care for the elderly or generally for individuals dependent on others for care.
  • Palliative care is NOT a recovery service.
  • Palliative care is NOT the care provided for basic life needs; it is specialized care.
  • Palliative care does NOT involve intensive and disproportionate interventions relative to the potential benefits obtained, nor does it involve therapeutic obstinacy during the final days of life.
  • Palliative care does NOT involve interventions or treatments that prematurely shorten the patient’s life.
General principles of palliative care
  • It treats the patient, not the disease (focuses on quality of life for the patient, not exclusively on the disease and medical treatments).
  • It improves the quality of life and can positively influence the course of the disease.
  • It supports life and considers death as a normal process in the course of progressive chronic diseases.
  • It does not hasten or postpone death.
  • It considers the patient and family as a unit of care.
  • It provides holistic care through an interdisciplinary team, to address all patient and family needs.
  • It offers a support system to help the family cope both during the patient’s illness and after the patient’s death, during the grieving period.
  • It provides services at the patient’s preferred location (at home, in inpatient units, in outpatient clinics, in day centers, in general hospitals).
  • It offers support to help the patient live as close to a normal life as possible until the end.
  • It is applicable from the early stages of the disease, in conjunction with other life-extending therapies (surgical interventions, chemotherapy, radiother­apy, etc.), and includes necessary investigations for a better understanding and management of clinical complications.
Values of palliative care
  • It values and respects life until its natural end.
  • It disengages itself from any form of voluntary life suppression: euthanasia, assisted suicide, and any other interventions assimilated to these.
  • The patient and family are at the center of care.
  • It aims for promptly alleviate suffering.
  • It treats the patient and family with compassion and empathy.
  • It pays special attention to spiritual care throughout the disease and particularly at the end of life.
  • Palliative care respects the values of all participants in end-of-life care – the patients and their family, as well as the professionals providing services in this field of care.

ANIP’s position on assisted suicideand euthanasia

ANIP has a firm position against euthanasia and assisted suicide, focusing on palliative care as a solution for patients with terminal diseases. The main arguments are:

  • Palliative care is based on a fundamental principle of respect for life, and euthanasia is considered contrary to this principle. The goal of palliative care is to alleviate suffering, not to cause death.
  • Palliative care promotes the alleviation of suffering and the improvement of the quality of life for patients suffering from progressive chronic diseases, without interventions to accelerate the dying process.
  • In Romania, religious beliefs have a significant influence, and euthanasia is perceived as contrary to spiritual and cultural values. Palliative care is compatible with these values, considering death as a natural process, without artificial interventions.
  • We advocate for the expansion of palliative care services to support individuals in suffering, so they can benefit from care at the appropriate time and place throughout the progression of their chronic disease and at the end of life (at home, in outpatient clinics, in hospital wards, in hospice units, in day centers), ensuring that patient access to palliative care services meets the real, growing needs for this type of care.

Differences between the purpose and role of interventions in ICU and palliative care

ANIP considers the following general clarifications as necessary in the context of current public discussions about patient care in intensive care units (ICUs) and palliative care inpatient units.

  • ICU purpose: to stabilize and save lives in critical situations, treat acute pathologies and their complications through advanced, often invasive procedures and techniques, to prevent death.
  • Palliative care purpose: to improve the quality of life for patients with progressive chronic diseases; it focuses on symptom relief and patient comfort, not on curing the disease; it avoids unnecessary invasive interventions and respects the patient’s care wishes; it operates as interdisciplinary teams to address the physical, psycho-emotional, social and spiritual issues of patients and their family.

Palliative care is the optimal solution for ensuring quality of life, alleviating suffering, pain, and other symptoms, maintaining functional capacity, with interventions along the course of the illness, from the initial diagnosis of a progressive chronic or life-threatening disease to the end, and further providing support to the family during the grieving period.

Current state of palliative care in Romania

  • Limited access to services. In many regions of the country, palliative care services are insufficient or nonexistent, leaving numerous patients without the necessary support.
  • Insufficient human resources. The specialized professionals in palliative care (certified doctors, specialized nurses, psychologists, social workers, therapists, and other necessary specialized personnel) are insufficient and unevenly dispersed across the country. Only about a quarter of the certified doctors are directly involved in palliative care services. This shortage severely affects the capacity to provide quality care and limits the establishment of new services.
  • Inadequate funding. Funds allocated for palliative care are insufficient, limiting the development and expansion of services nationwide. Most funds are allocated to inpatient units, to the disadvantage of home care services, outpatient clinics, and day centers. Funding for services based on daily hospitalization rates is limited (reflecting actual costs of 2011) and makes it difficult for palliative care providers to meet quality standards and existing staffing requirements.
  • Clinical protocols in use. Specific clinical protocols aligned with international standards are applied in providing palliative care in Romania. The protocol for terminal conditions supports professionals in managing patients at the end of life, ensuring the respect for their dignity and values, as well as for those of their families. Through a holistic approach, interdisciplinary teams provide support for physical, emotional, social, and spiritual suffering at the end of life.
  • Specific standards. Current legislation outlines both organizational and authorization standards for palliative care services in various settings (Ministry of Health Order no. 253/2018) and specific quality standards for palliative care, with well-defined criteria, requirements, and indicators that medical units must meet for ANMCS accreditation (Ministry of Health Order no. 446/2017).
  • Insufficient public education and awareness. Numerous patients, families, and even healthcare professionals lack adequate information about palliative care, leading to under-utilization of these services and unjustified overcrowding of acute care wards, without improving the quality of life for patients in advanced or terminal stages.
  • Legislation. Ministry of Health Order no. 253/2018 defines the levels of care, structure of palliative care services, beneficiaries, necessary human resources, required facilities, patient pathways, and annual reporting requirements for palliative care services. Law no. 339/2005 regarding the provision of medication under special control regime has put recent restrictions affecting patients’ access to necessary pain management medication.
  • Summary Regulations regarding the patients’ rights to decide on care:

1. Law no. 46/2003 on Patient Rights

Art. 13: The patient has the right to refuse or stop a medical intervention, assuming responsibility for their decision in writing.

Art. 15: The patient has the right to give informed consent to the proposed medical treatment after being correctly informed by the doctor about the diagnosis, procedures, risks, and treatment alternatives.

Art. 16: If the patients are no longer able to express their will (e.g., due to a serious illness or communication impairment), family or a legal representative may make decisions on their behalf.

2. Civil Code – Law no. 287/2009, through the concepts of capacity to act and mandate.

3. Law no. 95/2006 on health reform:

Art. 208 (par. 2): The patient has the right to request and receive all information related to their health condition, proposed medical interventions, risks and available alternatives, as well as the right to refuse treatment.

Art. 208 (par. 6): The patients have the right to refuse medical treatment, and their refusal must be recorded in medical documents. A patient’s refusal to undergo treatment does not exempt the doctor from providing all necessary information to ensure informed consent.

Informed consent: The patients must be fully informed about their diagnosis, available treatments, and associated risks, and must give their consent with full knowledge of the facts.

Recommendations for enhanced development of palliative care services (especially home-based care) at national level

  • Expanding access to palliative care. The Romanian Government, as a signatory to international resolutions on palliative care, must commit to ensuring universal access to palliative care by integrating it into the healthcare system, as well as through coordinated and uniform financing and development of specialized structures nationwide. Palliative care is a fundamental human right; therefore, every person in need should have access to palliative services without unjustified delay and in the setting closest to their needs and preferences.
  • Appropriate and non-discriminatory support for all palliative care providers, including NGOs. It is essential to ensure equitable access to resources for continuing existing services and developing new ones, including support for established NGO providers of palliative care and promoters of this concept at national and European levels since 1992-1996.
  • Adequate funding. Updating reimbursement rates for services in the health insurance system, to reflect real actual costs. Establishing a dedicated budget for palliative care, including home care and outpatient care.
  • Staff training and recruitment. Investment in the professional training of medical staff in palliative care and creating incentives to attract specialists to this field are essential. Encouraging participation in training courses for professionals in areas with insufficient service coverage (e.g., scholarships etc.) is necessary.
  • Re-establishment of the palliative care advisory committee within the Ministry of Health. The recent inclusion of this committee as a subcommittee within the Oncology Committee is inappropriate, given that palliative care is needed and provided for many non-oncological diseases. This limitation affects access to palliative care for patients with various non-oncological conditions, impacting their rights as beneficiaries, as defined in Ministry of Health Order no. 253/2018. It is recommended to consult and involve palliative care specialists in the process of drafting normative acts influencing this field.
  • Collaboration of professionals to develop normative acts that regulate patient rights to decide on the care received. This should include regulations on advance directives (expressing anticipated desires for assistance and care), do-not-resuscitate orders (patient’s desire not to undergo cardiopulmonary resuscitation in extreme cases or incurable diseases in advanced stages, to avoid artificial extension of life), and palliative sedation (sedation of patients when intense symptoms cannot be controlled by other means; this does not hasten or cause death but only ensures patient comfort and is reversible).
  • Establishment of the palliative medicine specialty for doctors. Creating a working group within the Ministry of Health, composed of certified palliative care doctors with clinical experience in palliative care services and teaching experience in the “palliative care” discipline at medical faculties. This working group will develop the curriculum for training in the specialty of “palliative medicine” (a distinct medical specialty, as exists in other European countries) along with a strategy for the gradual transition from the complementary competence studies certificate to residency in palliative medicine, and monitor the achievement of strategic objectives and the subsequent definition of rights and competencies granted by each form of postgraduate medical education certificate.
  • Awareness campaigns. Initiating national information campaigns for the general public and healthcare professionals about the importance and benefits of palliative care.

Conclusions

ANIP supports palliative care as a human right: palliative care ensures the respect for fundamental human rights, warranting a good quality of life until the end, reducing suffering, and ensuring a dignified death.

Palliative care is an essential need in Romania’s healthcare system. By implementing the above recommendations, broader and fairer access to these services can be ensured, providing patients and their families with the support needed during the most challenging times of life.

The effective management of pain and other symptoms significantly improves the quality of life for patients and their families, supports patient dignity, and protects them from unnecessary or useless interventions during advanced and irreversible stages of terminal diseases.

“You matter because you are you, and you matter to the end of your life. We will do all we can, not only to help you die peacefully but also to help you LIVE until you die.” – Dame Cicely Saunders   


 

CONFLICT OF INTEREST: none declared.

FINANCIAL SUPPORT: none declared.

This work is permanently accessible online free of charge and published under the CC-BY.

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Bibliografie

  1. https://www.who.int/news-room/fact-sheets/detail/palliative-care

  2. https://hotnews.ro/serviciile-de-paliatie-la-domiciliu-si-in-ambulatoriu-vor-fi-decontate-rafila-sustine-ca-romania-are-nevoie-de-4-000-de-paturi-pentru-paliatie-din-care-3-300-exista-a-circulat-ca-avem-doar-1784401

  3. https://cnas.ro/wp-content/uploads/2024/08/7.pdf 

  4. http://cas.cnas.ro/media/pageFiles/A.3.3%20Raport%20furnizori%20ingrijiri%20paliative%20Romania%202019.pdf. Report completed as part of the PalPlan Project “Improving institutional capacity for the coordinated national development of palliative care and home care”.

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