The end of life care is a bioethical issue of great relevance, even more, in the current crisis of Covid 19 (read HERE and HERE). A study published last December in BMC Medical Ethics entitled Barriers in implementing the dying patient law: the Israeli experience – a qualitative study, has a particular interest. Despite the fact that the article studies the current procedures in the care of patients at the end of life in Israel, the same authors affirm that the barriers to meeting the needs of these patients are in a certain way applicable globally.

We excerpt what we think of major interest in this large study.

The authors based their work on the “Patients Rights’ Law – 1996” which in most aspects comparable to several developed countries. “[…] which states that every treatment must be accompanied by informed consent, on the one hand, and if a person is in danger of death he must be treated even without consent. There were diverse interpretations in a situation when someone was unable to give consent at the end of his life and it wasn’t clear what his wish was or even if we knew he did not want to be treated, it was not clear whether he should be treated. The Dying Patient Law includes the right to refrain from receiving medical treatment. The uniqueness of the law is that it allows a person to avoid, at will, life-prolonging medical treatment and to give these instructions in advance, in case he is unable to express his desire not to receive life-prolonging treatment. The law also states that every effort should be made to alleviate the pain and suffering of a dying patient”. They continue “Despite progress in dealing with the issue (of end of life care) and the very existence of legislation in Israel and in other Western countries, many barriers exist to implementing such legislation in the Western world, and not only in Israel.”

The study identifies which are the main barriers to end-of-life care. “This study found that there are still many barriers to the implementation of the law, which are expressed in six main themes:

  • The law, procedures, and forms;
  • Human aspects of the patient, the family, and the medical staff;
  • Knowledge and skills of the medical teams;
  • System resources;
  • Clinical aspects; and
  • Communication between clinicians and medical organizations.”

The study develops each aforementioned barriers,

  • “Barriers stemming from the law, procedures, and forms

The form which the patient is asked to sign constitutes one of the main obstacles to the implementation of the Dying Patient Law in the State of Israel. The form is written in legal language and is not comprehensible to the average person; it is too long and full of details, which promotes mistakes in filling it out, making it hard for the patient to participate in the (consent) signing process.”

  • “Barriers arising from clinical aspects,

Most interviewees opposed the use of a six-month life expectancy definition because this measure could not be used for every type of disease. While in certain types of cancer, there are metrics by which the patient’s life expectancy can be estimated, in other diseases, there is difficulty in predicting life expectancy and it cannot be defined as 6 months, a fact that prevents the patient from falling under the scope of the law.”

  • “Barriers in the knowledge and skills of the medical teams

Some of the most significant barriers to the implementation of the law raised in the study relate to the lack of knowledge and skills among the clinical staff. Almost all of the interviewers noted that most of the staff lacked the complex proficiency needed for holding painful conversations with end-of-life patients. In addition, a cultural barrier, especially among doctors, makes it difficult to cope with the subject of death.” An issue he has approached in our Observatory, the fear to speak about death with the patient.”

  • “Barriers in communication between care teams and medical institutions

When a patient from the community is admitted to the hospital, the medical staff is required to clarify his preferences and check if his advanced directives are valid and relevant. Unfortunately, the staff is not always available to do it.[…] When staff members talk about end-of-life options, they sometimes encounter resistance because they fail to make it clear that acknowledging the end-of-life and the cessation of aggressive therapies does not mean not abandoning the patients.”

  • “Barriers in resource allocation

The enactment of the law was not accompanied by the addition of dedicated resources to the organizations which are responsible for its implementation. Conversations to clarify preferences and instructions take a long time, especially for a patient with complex care needs. The problem is not only allocating the time but also the emotional availability such conversations require. Physicians that we interviewed stated that it was impossible to hold such a conversation during the frenzied pace of a normal working day when patients were waiting outside: “How can I even talk to them about ‘what would you like?’ Do I have to go to their home? Not to do it in the clinic?”.”

The study makes a long comment of these barriers we quoted only one phrase to give to the lector an idea of the content, analyze “In the last few years, many participants have detected more sensitivity to the existence of patient rights and more aware that it is not right to give treatment at all costs. However, the study participants also noted that the barriers raised are not necessarily related to the law, but rather to parallel and separate progress in the clinical approach to end-of-life quality treatment.”

The Conclusion of the study insists on the relevant role of the family doctor in helping to resolve these issues and several measures to enhance end-of-life care now and in the future.

Laws dealing with end of life care

It says “In Israel and the western world, the relationship between clinician-care teams and patients is strong. Medical teams in the community are in daily contact with elderly and sick populations. However, the proportionate increase in the elderly population of developed economies such as Israel in relation to the number of medical teams will, in the not-too-distant future, strain care team access to this demographic. This will thus affect the implementation of laws dealing with end-of-life. Therefore, it is recommended that the role of the family doctor in end-of-life treatment should be strengthened. The structure and response of the units for home treatment should be taken into account, to enable greater accessibility to homes for the aged, medical assistance housing, and hospice homes that can provide an appropriate response to end-of-life patient needs. At the same time, awareness must be raised among the general population, medical staff as well as other therapists in the health system. This is needed to channel the resources, knowledge, support, and tools to these medical teams for improving treatment and responding to patients who need information and support for mastering end-of-life laws, with the aim of promoting the legitimate rights of all citizens who are at the end of their lives.”

Our bioethical statement of the end of life care

The relevant role of the family doctor suggested is one of the best contributions of this study. Personalize and make feasible the coordination and follow up of necessary response to the end of life patients

Given the crisis in intensive care units caused by Covid-19 and the ethical challenges they face as a result of the constraints imposed upon them by the pandemic, the proposed participation of family doctors could help relieve pressure on intensive care physicians, improving confidence in healthcare services and helping to resolve the doubts of patients and their families in end-of-life decision-making.

We welcome this long and interesting work. It is of significant bioethical interest and we support the synthesized recommendations of the authors in the Conclusion. It is the first step to globally approach so sensitive medical topics that in some cases could affect the credibility of the health care systems.

Manuel Zunin

Bioethics Observatory – Institute of Life Sciences