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. In these six themes, we identified 44 areas that generate these barriers as reflected in the Results section. (See Fig. 1)
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 signing process. A homecare nurse expressed frustration with the forms thus: "The ones who wrote the form are lawyers, where covering for themselves was the most important part for them, not the people [...] who fill it out with the patients." [FGN4].
Specifically, the excessive details regarding the case and the definition of suffering is seen by many of the participants as unnecessary and burdening. Thus, care-takers think that the legal emphasis and the lack of ability to express the patient and his family's opinions, these forms miss their target, even when intended to fill an important role in their interpretation in the moment of truth. "It misses the target […] a structured form has advantages, but the biggest disadvantage is […] that it doesn't allow for personal expression […] they need to do something that gives place to the patient and his family, and that way we can make decisions that fit better with their point of view" [N1].
Even after receiving complete and detailed medical explanations, the patient does not have the capability to understand the complete meaning of the medical procedures described in the form. "The form contains a lot of difficult and burdening questions, and even if the patient receives the best possible explanation for the medical terms from the best doctor, he will still have a hard time answering the questions" [M7].
For clinicians, therefore, legal emphasis and failure to allow for expression of patient opinion mean that the forms fall short of achieving their goal. Even after receiving comprehensive medical explanations, the individual rarely has the necessary ability to understand the full significance of the medical treatments listed in the form. As one manager noted: "The form has a lot of demanding and difficult questions, and even if the patient receives the best explanation from the best doctor who will explain the medical terms to him, he will have trouble answering the questions." [M7] On the one hand, according to the social workers, the fact that clarifying the patient's preferences and following the directives are not a regular part of the protocol of a home visit impedes the implementation of the law: "We have to make a very clear protocol routine: A, B, C, D [...], and you have to mark the X in the right place." [FGSW7] On the other hand, there was opposition to this assertion in the nurses' focus group, with their opinion being that clinicians should be left with the flexibility to clarify these issues in a manner that is timely and appropriate for each one of them: "The most important thing is to open up a space, to let you talk about what you would like and what's important to you and what your preferences are." [FGN4].
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 six months, a fact that prevents the patient from falling under the scope of the law.
For patients who are not defined as "dying patients” and therefore are not covered by the law, no preliminary-medical-guidelines can be implemented. In cases where their wishes are unknown and they are unable to express them, the assumption is that they would like to live and should be given treatment. This presumption causes difficulty and great resentment among many care teams. In their opinion, the law clashes with accepted professional views. In the words of one manager: "They put the staff in an impossible situation [...] Help the patient and you're a criminal, or else force upon the patient treatment that an hour ago, a day ago, a week ago, he told you he did not want." [M3] It should be noted that according to Israeli law, the medical staff can fulfil and respect previous wishes of the patient, including a wish to avoid medical treatment. Although there was great support for the spirit of the law and the principles it charts, there was still criticism and frustration that the details of the law do not match the clinical reality.
"Jurists can say 'that is right, that is wrong" by moral or legislative categories, but in a large portions the law is in disagreement with reality […] so either there is no legal answer, or there is an answer and it does not fit with our professional views" [P9]. In many cases, the end-of-life patient has many diseases, and it is not clear which of these diseases will result in the patient's death. Thus, physicians avoid setting and documenting the patient's life expectancy because of the uncertainty involved, in addition to the fear of being sued using the information given in these forms. "A problem I encountered is many physicians are not willing to sign the instructions: I will not sign that the patient understood all that I've explained, and that is why the instruction is understanding-based" [M5].
Barriers arising from human aspects - patient, family and medical staff
Implementing the Dying Patient Law creates personal and cultural barriers for the staff, the patient, and the family, as well as a cultural difficulty in dealing with death. Some interviewees noted that many physicians still take a paternalistic approach, and their perception of whether to refrain from treatment due to futility or to extend life is a professional decision made by the physician alone. However, it was noted that there has been progress in doctors' perceptions, and in recent years awareness has been increasing, especially among younger doctors. The older the patients and the poorer their cognitive state, the less awareness they have of their rights, with the medical staff less disposed to speak to them directly. Most of the communication in these situations is focused on the family, even if the patient is competent. As one social worker put it: "When I come in at the stage of home care, I feel a sense of having missed out because I did not know the patient before [...] I know that the hospital will determine that he is not competent." [SW3] It also emerges that the percentage of citizens prepared for the end of life is very low, and if the patient did not do early preparatory work while he was healthy or in the non-hazardous stages of his illness, it will be much harder to start thinking about end of life in the stages when death is approaching. As one nurse noted: "I really see that patients are dodging the possibility that 'maybe I will not survive' [...] It is very threatening." [N1] In practice, people from different cultures will not necessarily agree on whether it is right to tell the patient everything about their condition, and, in cases of disagreement, the clinicians do not know how to act. The patient's family plays a very significant part in the treatment process at the end of life. Hence, when the patient is in the early stages of the disease or is still healthy, it is important to promote communication within the family on the issue. However, it is acknowledged that encouraging communication is not a feasible solution for every family, and, in any event, a way must be found to deal with cases where there is a conflict between family and patient wishes.
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. Many noted that there is no awareness of the obligation imposed by law on the medical staff in all matters relating to informing the patient of his condition and exploring his preferences.
In fact, there is no clear statement about who should be responsible for initiating conversations with patients towards the end-of-life and raise this issue. The unclear issue of responsibility creates ambiguity, which touches not only upon the family and hospital doctors, but also the experts in the community, home care units, and nursing homes. A physician said: "The loop between the care givers is not closed, and everyone says, 'Why should I do it? Let him/her do it!' But what is right?" [P1] The difficulty of establishing rules on the subject came up in the interviews, since the right person to conduct the conversation depends very much on the specific situation, and especially on the type of illness. As one social worker noted: "The question of who will manage this issue-the community or the hospital-depends on the illness" [SW4]. Moreover, a number of palliative experts noted that there is a difficulty since the Ministry of Health has not established clear standards for palliative care, and this undermines the quality of treatment and the equality of access. Some of the participants in the study think that nursing homes and assisted living facilities are actually an ideal place for palliative care outside the hospital.
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. There is adherence to this process in relevant situations, such as person who suffers from widespread malignancy and there is danger to his life or an oncologist patient who is beyond treatment. This situation has been in this research as a barrier to fulfilling the patient's will. Some of the interviewees noted the importance of translating the directives into specific clinical instructions for dying patients, such as the Physician Orders for Life-Sustaining Treatment (POLST) form used in the US. Others noted that the solution should be to improve end-of-life services in the community so that patients who are receiving only palliative treatment will not even be taken to a hospital in an emergency.
In nursing homes, it also emerged that an unequivocal demand made of the Health Ministry is essential in order to have the matter of the advance directives implemented. As one manager said: "In institutions we operate according to the procedures of the Ministry of Health. That is what the Ministry of Health stipulates! If they don't ask, we don't act." [M1] The interviews reveal that involving the management, especially hospital managers and department managers, is critical to the successful implementation of the law and palliative care: "From inside the hospital management, it is possible to bring about change. It is our responsibility [...] There are priorities, and this was not one of them. The director of the hospital, and not the nursing director, should have led this."[P8]
The focus groups also clearly demonstrated the need to implement the issue from the top-down –the health ministry directorate and the health funds, through the directors of the wards to the staff members themselves - in order to move beyond local initiatives. Nevertheless, the management may prove to be a barrier: "The social workers and the nurses in the field were happy to go in this direction, but even here the administrative factors are a barrier. They are very afraid that things will not be done exactly according to the forms and the law, and then they will not be covered." [P9] 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?" [P12] The issue of compensation appears to be secondary compared to the issue of time, and if the doctors had time for it and were convinced that this was correct medicine, there would be no need for specific compensation, just as there is none for other types of treatment. In the words of one nurse: "Once a chronic disease is detected [...] it takes time, skill, a lot of listening. Unfortunately, this does not happen. It happens more with patients with severe complex care needs." [N6] Another aspect of lack of resources is lack of additional budgets earmarked for the expansion of palliative services, with an emphasis on low of standards for experts and those responsible for implementation. Moreover, insufficient funds can detrimentally affect training and mentoring of teams: "Everything that the Ministry of Health decides and is not earmarked specifically in the budget, such as the guidelines regarding palliative medicine [...] is always problematic. And then everyone improvises [...] just in order to discharge their minimal obligation." [P10] In the health funds, there is a growing awareness for palliative care at home. All health funds have established Home-Hospice-Units that specialize in palliative care and available 24/7 for planned and urgent home visits. The teams of these units include a professional palliative multi-disciplinary team. The service is provided by HMO teams or by teams of private companies from which the HMOs purchase the service, and the costs are higher. The number of people who can get the service is limited.