Alzheimer’s Disease is a disorder that develops slowly over the course of many years. This disease has no cure as of today and the treatment focuses on slowing its progression. One of the central pathologies of the disorder is dementia. Dementia, an irreversible process, presents mainly amongst the elderly and is accompanied by a decrease in cognitive function as well as impairment of one’s ability to perform daily functions and interact with their environment. Part of the disease progression involves the patient suffering from bouts of confusion, anger, suspicion, and even violent outbursts. This position paper will deal with a number of questions regarding treatment of dementia patients.
One component that needs to be addressed deals with telling the patient the truth: are we obligated to disclose all the information to the patient regarding their condition? In advanced stages of the disease, this question is not relevant since their mental capacity is diminished, but in preliminary stages – when the disease has only just been discovered – the question arises: should we tell the patient about his condition, or perhaps is it better to withhold the information from him, thereby protecting him? Is it proper to include him in the decision-making process or perhaps it is preferable to decide for him what treatment is best? Another issue within the scope of this discussion is: when the patient’s mental faculties are impaired, can one provide him false answers to questions he asks if it will calm him and give him peace?
A second aspect of this discussion is the treatment. When the patient is in advanced stages of the disease, may we withhold from administering treatment that will only prolong their life and not cure the disease? Does a patient suffer in this state of consciousness and therefore should he not receive life-prolonging treatment? Even if he is not suffering, is there meaning in life such as this and is there an obligation to prolong it? Is it proper for a patient to issue an advance directive while they are mentally competent? What is the power of directives such as these? When there is no directive, is it proper to assess what the patient would have wanted to be done to them in their current state1?
2. The Ethical Dilemma
In our discussion we are confronted with two main ethical issues: firstly, the obligation to tell the truth versus the need to protect the patient. Second, the obligation to provide medical treatment for a terminally ill patient.
The value of truthfulness is a central moral principle that obligates providing full and complete information to the patient, yet at times the wellbeing of the patient and the obligation to do no harm contradict this – specifically when the assessment is that the patient’s prognosis will be better if he is not aware of his condition. The current approach of modern medicine follows the autonomic approach, according to which man is the owner of his body and is the one who should make decisions regarding it, and therefore there is a value and a requirement to receive complete information surrounding his condition.
Elsewhere we have expanded on and presented the different considerations involved in telling the truth to a patient2, however some of these factors are not relevant (or less relevant) when a patient begins to lose their mental faculties. An additional question arises when treating a dementia patient: does one need – and to what extent – to tell a patient about his condition in the preliminary stages? The possible rationale for not disclosing is: uncertainty regarding the diagnosis; difficulty of the patient comprehending the diagnosis; desire of patient not to know (in some cases); negative societal repercussions; damage to mental health; and loss of hope. However, it seems that as a general principle, patient autonomy dominates in this context and with it additional considerations such as the need to conserve a patient-doctor relationship of trust, the need of the patient to confront and cope with the disease, and the patient’s need to plan their future and our obligation to support the patient and their family. Therefore, one should find a way to inform him of his condition that won’t bring him harm3.
In practice, the balance between telling the truth and withholding information when necessary is dependent on the culture and varies from country to country. Not only do the legal status and medical policies differ by place, but also the public’s view towards whether one should withhold information changes via place and time. In America and many Western European countries, the paternalistic approach of withholding information from patients is not accepted, and the obligation to tell the truth generally dominates.
According to the law in Israel,4 a patient needs to provide ‘informed consent’ for a procedure, and in order to achieve this one must provide them with all the required medical information. The provider is allowed to withhold information only if an ethics committee confirms that telling the patient this information would cause serious harm to their health.
2.2 Medical Treatment
The issue of withholding (or withdrawing) treatment in dementia is caught in the tension between the inherent value of life and its sanctity and the value of man’s autonomy over his body. On the one hand, the inherent value of life requires preferential treatment for conserving life against any dangers that befall it. We cannot know the deep significance of each minute of life, and thus we might not be permitted to withhold from treating a patient in front of us – no matter the case. On the other hand, the patient is the owner of his body and, if he is of sound mind, he should be the ultimate decider regarding his or her treatment options. According to this principle, even when the patient is not mentally competent, such as in the case of a demented patient, it is proper to assess what they would have done in this situation and to give this assessment significant weight in the decision-making process.
When decided between these values and perspectives one should differentiate between direct treatment of the disease, which allows for greater patient consideration and questions regarding prognosis, and supportive / palliative care such as patient nutrition, where the patient’s wishes have less weight. The balance between these values differs between societies, and therefore the legal status varies from country to country5.
3. The Jewish Position
Truthfulness is an exalted and lofty value. The Torah not only prohibits falsehood but even warns one to distance themselves from it: “From a matter of falsehood distance yourself” (Shemot 23:7). Chazal emphasized the importance of truthfulness, saying “on three things the world stands – on judgement, on truth, and on peace” (Pirkei Avot, 1:18). Even so, Chazal determined that telling the truth is not an absolute value, and “it is a mitzvah to deviate [from the truth] for the sake of peace”6.
Since the value of preserving life is a holy virtue, the value of truthfulness is rejected in its place, and it is a mitzvah to deviate from the truth when it could harm the wellbeing of the patient. We found a few sources that allow withholding information from a patient for their wellbeing (Moed Katan 26b):
“Our rabbis taught: [regarding] a sick person whose relative passes away – we do not inform them that they have passed, for perhaps their sanity will be impaired. And we do not tear kriyah in front of him, and we quiet the women in his presence”7.
One can learn from this Baraita that in certain cases a secondary body can determine that information must be withheld from a patient – and it is possible to expand this to the category of medical information8. The underlying assumption should be to tell the truth, and concealing the truth or deviating from it can be done when it is beneficial for the patient and only when these conditions apply: 1) it is almost definitive that the best medical option for the patient is better than the one he would choose on his own; 2) the patient is unable to make thought-out decisions; 3) the motivation for deviating from the truth is maintaining the honor of the patient and not any other purpose (such as considerations of the family).
Furthermore, even when these conditions apply, one should limit the heter by a number of restrictions:
Man is an autonomous entity and comes before anyone else in determining if and whether he will be treated. Therefore, in preliminary stages of Alzheimer’s disease, it is proper to have complete disclosure to the patient, assuming they have functional decision-making capacity9.
Usage of the principle of deviating from the truth should be done in a limited and calculated fashion, and usually only withholding of truth is permissible and not lying outright. When there is no other possibility, and it would be beneficial for the patient, it is permissible even to lie. Even when deviation or lying is required, it is important not to ingrain within oneself the attribute of falsehood10.
3.2 Respecting the Patient
“Man is dearest [to God] for he was created in [His] image” (Pirkei Avot 3:14). Each person is created in the image of God, and there is an obligation to respect every person – even those who lack or are losing their mental capacity. It is unnecessary to state that the mitzvah of respecting your father and mother applies at all times, both during their life and afterwards. Elsewhere we have expanded on the halachic issues surrounding care of a sick parent11.
3.3 The Sanctity of Life and the Value of Temporary Life vs. Prolonging Life Without Recovery
Sanctity of life is a tremendous and lofty value. Chazal expounded the verse, “’And you should live by them’ – and not die by them” (Yoma 85b) and taught that the majority of mitzvot are pushed aside for pikuach nefesh. The Gemara (ibid. side a) states that it is obvious that even for incurable maladies and the terminally ill do we violate the Sabbath12. Each moment of life however is of value. This halacha, that establishes the inherent value of life as lofty but not absolute, aids us in the issue of medical treatment in dementia patients: there is value to a patient’s life even when those around them do not sense that there is a reason to live1313.
Despite the central status of the inherent value of life, one can find evidence for certain end-of-life cases where the person was permitted to withhold from themselves treatment even when there was no suffering1414. The Gemara (Sotah 46b) recounts that the city of Luz that the angel of death was not allowed to enter “rather, when the elders decided they had reached the end [of life] – they would exit the city walls and die”15. The midrash tells of an old woman who lost the will to live. Rabbi Yose instructed her to stop going to synagogue, and due to this she passed away three days later. The woman claimed: “I have aged too much, and from hereon out I live a dismal life, unable to taste food or drink, and I wish to pass from this world”16. This woman did not suffer immensely, and even so Rabbi Yose accepted her claim and helped advance the timeline of her death1717.
3.4 The Sanctity of Life vs. Prolonging Life with Suffering
Halacha recognizes the existence of cases where the obligation to preserve a life is pushed aside due to tremendous suffering. The basis for this ruling is found already in the words of the Rishonim. For example, when the Rishonim try to explain the end of King Shaul’s life, they conclude that the prohibition of suicide was waived due to the suffering Shaul would have endured in the hands of his enemies18. The greatest poskim of our generation have also engaged in this question from a medical perspective19.
An additional source of significance regarding the status of pain when there is no chance for recovery is the account of the death of Rabbi Chanina Ben Tradyon, who was sentenced to execution by fire (Avodah Zara 18a). On the one hand, Rabbi Chanina refuses to open his mouth in order to expedite his death; on the other hand, he consents to the offer of the executioner to stoke the fire and remove the sponge covering his heart, bringing his death closer. One can deduce from here that at a certain stage it is permitted even to actively remove something preventing the death of a person20.
3.5 The Sanctity of Life – Dementia Patients
What is the status of the two components discussed here – prognosis and suffering – in the context of a dementia patient?
It seems that the obvious consensus is that in preliminary stages of the disease, when the patient is reasonably functional and their mind is for the most part intact, it is prohibited to withhold any treatment under that assumption that they will deteriorate regardless to a state of senility. However, as the disease progresses and the cognitive functioning of the patient declines, the issue of whether there is reason for extending life begins to have more prominence. Granted that one cannot ask a patient such as this if ‘they have lost the will to live’21, but even lacking an advance directive, one can assume that at a certain stage ‘we may testify’ that they have lost the will to live. It seems that the statement said by the woman to Rebbe Yose in the Midrash can be stated by almost all dementia patients in advanced stages, even if in practice we cannot hear their opinion22.
Suffering in dementia patients is not fully understood from a medical perspective. Some experts believe that the patient lacks the consciousness for suffering, and some reason that they are suffering but lack the ability to express this. Practically, the medical team usually can identify minor symptoms of suffering in patients who are in pain23. In the words of the poskim one can find many different positions regarding this discussion, that range from prioritizing the inherent value of life in all cases and the obligation to treat and save a life even when there is no chance of recovery and suffering, to considering the will of the patient who says ‘better is my death than my life’24. In practice, with the proper amount of restraint and precise evaluation of each case independently, it seems that for a patient in a state of advanced dementia one may withhold from performing ‘heroic treatments’ such as mechanical ventilation, and nutrition (which generally has no medical benefit in such a case), but one should administer treatments that lessen their suffering.
4.1 Truthfulness and Treating the Patient with Respect
- A patient is entitled to receive full information regarding their disease and the physician is obligated to disclose this information. Included in this are Alzheimer’s patients, of which one should inform in the preliminary stages of their condition.
- Regarding a patient that is willfully oblivious to their condition or actively ignoring the information – one should respect their choice as long as this does not impact them negatively.
- One should treat a patient with humane respect (additionally, parental respect – when a son or daughter are taking care of their parent), even if they are not mentally competent.
- There is an obligation to tell the truth to a patient and distance oneself from falsehoods. When a patient is not mentally competent, one can withhold information, if the assessment is that this information will not benefit them in any way.
- Even when it is ideal to withhold information, if there is a concern that the information will reach the patient from somewhere else, it is proper to preempt the exposure and perform it in the proper fashion, with care and sensitivity.
- Regarding a patient who loses a relative – it is proper to withhold from informing them and to abstain from mourning rituals in front of them. Granted that one must consider whether the information will reach the patient from a different source; and if there is such a concern, one should find the right time and conditions to break the news to them.
- One may deviate from the truth when the assessment is that this will benefit the patient. In extreme cases, one can even lie when there is a need to calm the patient and it will have no harmful effects. However, it is prohibited to habituate oneself with lying.
4.2 Medical Treatment and Nursing Care
- Regarding a dementia patient who preemptively dictates that they are not interested in life-saving procedures – one should generally withhold from treatment. However, one should consider that it is possible that when they expressed their will, they were not aware of the suffering involved in withholding treatment.
- When there is no advance directive, one should take into account the assessment of what the patient would do in this situation.
- In the preliminary stages of the disease, it is proper to offer a dementia patient to dictate an advance directive.
- RIn the preliminary stages of the disease, it is proper to offer a dementia patient to dictate an advance directive.egarding a dementia patient with a high level of dysfunction – there is no obligation to perform ‘heroic treatments’ such as mechanical ventilation, CPR, or invasive surgeries. If the patient expresses their will preemptively that these procedures not be performed – it is prohibited to perform them, but one must provide supportive treatment that alleviates suffering.
- Regarding a dementia patient that refuses to eat, one should speak to them emphatically, if possible, and explain the importance of eating. One should assist them in eating, feeding them with a spoon, etc. in a way that preserves their dignity and to the greatest extent without forcing it upon them.
- When there is no advance directive, if there is a need to insert a nasogastric tube temporarily and it is possible to recover from it – one is obligated to perform this. However, if one would apparently not recover from this and one can assess that the patient would suffer tremendously as a result – there is no obligation to insert it. This issue is dependent on many variables, and one should consult with the medical team and a rabbinic authority.
- If the assessment of the doctors is that all hopes of recovery have been exhausted, and the assumption is that the patient would not suffer from withholding nutrition, one is permitted to even remove the nasogastric tube, especially when continued nutrition increases the risk of infection and brings death closer.
- With this, the preferred method in this case is to move to nutrition via less painful methods, and if there is no method available, one may rely on saline and glucose administration intravenously.
- There is an obligation to continue drug administration considered routine for patients.
- One may withhold drugs that are assessed to only prolong the patient’s life of suffering and not heal them.
- Antibiotics require a case-by-case analysis to determine whether they are a routine treatment alleviating the patient’s suffering or prolonging it.
- We have dealt with the concepts discussed here in other position papers: ‘Telling the Truth to a Patient’, ‘Treating a Patient with No Chance for Recovery’, ‘Medical Treatment and Nursing Care of a Parent’. For additional discussion see there. Regarding additional aspects of treatment of dementia, read position papers ‘Prayer for an Infirm Person’, ‘Patient Fulfillment of Mitzvot’, and ‘Prayer for the Death of a Patient’.
- See position paper ‘Telling the Truth to a Patient’, article 2.
- See the papers cited there, endnote 2.
- See The Medical Halachic Encyclopedia, volume 5, entry ‘Terminally Ill’, pages 171-176.
- According to Yevamot 65b and many other examples in the Talmud and the poskim which permit and even obligate in certain cases to deviate from the truth. See: Mishneh Torah, Hilchot Rotzeach Ve’Shmirat Hanefesh, Chapter 12, Halacha 8; Responsa of the Rama, article 11; Rav Poalim Responsa, article 364. We have expanded on this topic in the position paper ‘Telling the Truth to a Patient’, see the sources cited in endnote 4 there.
- This is the ruling in the Shulchan Aruch, Yoreh Deah, article 337:1. From the wording of the Baraita and Shulchan Aruch it seems that it is only permissible to withhold from saying the truth, but the Achronim explain that if a patient asks about the deceased, it is permissible to lie and say that he is alive (Kol Bo on Aveilut, page 17). According to Rabbi Shlomo Zalman Auerbach, if a mourner needs to visit the patient, it is permissible to hide their mourning state, wear shoes, and clothes that are unripped. See Nishmat Avraham, Yoreh Deah, article 337:2.
- An additional source of significance is the Midrash Kohelet Raba, Parsha 5, which recounts the story of the disease of Chizkiyahu, teaching that the accepted and proper custom is not to tell the dying patient of their nearing end. We dealt with this in detail in position paper ‘Telling the Truth of the Patient’ and our conclusion there what that the main consideration should be the wellbeing of the patient – if telling the truth will benefit them or not. We dealt with the obligation of informing the patient of their upcoming passing in order to allow for the vidui confessional there, but it seems that this issue is not relevant for an Alzheimer’s patient.
- We have discussed autonomy and man’s ownership over his body here and in other places; see the referrals there.
- See Sukkah 46b and Yevamot 63a. The Amoraim avoided saying falsehood even when there was a benefit and it would cause no damage, due to the verse “their tongues learned matters of lies” (Yirmiyahu 9:4). See as well the Rabbeinu Yona in the Shaarei Teshuva, Shaar 3, and his commentary on Pirkei Avot 1:18, where he writes that telling lies even when there is no damage still bears a great punishment due to habituation of man to falsehood..
- See position paper ‘Medical Treatment and Nursing Care of Parents’.
- This is the ruling of the Shulchan Aruch, Orach Chayim, 329:4.
- See for example Minchat Shlomo Responsa, volume 1, article 91:24: “For we do not have a metric to understand the concept of ‘life’, how to measure its preciousness and importance, not even in the Torah and mitzvot, for we violate the Sabbath even for a sick elderly man covered in boils, even if he is deaf and mentally incompetent, cannot perform a single mitzvah, and his life is just a burden and great suffering for his family and causes them to take time from Torah and mitzvot…”.
- We see in Tanach as well that Eliyahu and Yonah ask to die, without the existence of physical suffering. Rachel says to Yaakov “bring me children for without it I am dead” (Bereishit 30:1), teaching us that life without childbearing is considered in her eyes like death. Elsewhere we discussed medications, specifically whether it is beneficial to prefer a life-saving medication over a medication that ‘just’ offers quality of life. See: Rabbi Yuval Cherlow, ‘Inclusion of Medications for Quality-of-Life Improvement in the Healthcare Package’, Tchumin, 28 (5768), pages 383-391, especially page 390.
- Rabbi Tzvi Shachter (‘Laws of Death and Gavra Ketila’, Assia, 49-50 , page 136) learns from here that saving the life of a person who has lost the will to live does not constitute pikuach nefesh. In contrast, Rabbi Waldenberg explains that the people of Luz experienced a miracle and leaving the city restored their natural state, therefore one cannot expound from this story. For additional discussions and stories relevant to the discussion of withholding treatment, see position paper ‘The Impact of Suffering on Medical and Halachic Considerations’, specifically endnote 4 there.
- Yalkut Shimoni, Parshat Eikev, article 871.
- Yet see: Tzitz Eliezer Responsa, volume 9, article 47; ibid., volume 18, article 48:4. Rabbi Waldenburg writes that this cannot be used as proof, for there was no withholding of medical treatment but from the divine effects of prayer. One can also find evidence to disprove this source, as later Yalkut Shimoni texts are not compilations with halachic weight and the last two sources are not direct halachic sources but aggadic in origin.
- Two components are discussed surrounding the death of Shaul: (1) the act of suicide itself (Shmuel 1 31:3-5); (2) the story of the Amalekite youth who claimed to bring King Shaul’s death to fruition (Shmuel 2 1:6-15). The main Talmudic source used for the halachic discussion of death-quickening procedures in places of suffering with poor prognosis is the death story of Rabbi Chanina ben Tradyon, see later on. Additional discussions: 1) Ulla’s opinion regarding the account of the two residents of Hozai (Nedarim 22a), who told the murderer to further incise the neck and bring the victim’s death quicker; 2) The account of Rebbe’s death (Ketubot 104a) and the question of whether there is a stage where one can pray for the death of an ill person; 3) The ruling regarding one trapped under debris on Shabbat (Yoma 85a), where we violate Shabbat even for a person found to be crushed and mortally wounded .
- See Igrot Moshe, Choshen Mishpat, volume 2, article 74:2: “In cases where there is suffering and no medicine can alleviate it, [in these cases] it is better for one to die than live such suffering”. His opinion is that in cases where there is no option for healing a person and continued treatment is fraught with suffering, there is no obligation to heal the patient; even in cases where we do not know the patient’s opinion, the assumption is that death is preferred over life. Compare this to the Tzitz Eliezer, volume 18, article 62, that even in cases of suffering there is no heter for withholding treatment: “That even a life of suffering and severe illness, it should never befall us, that are unavoidable, even [in these cases] they are preferred over death”. See also endnote 24 later.
- See an extensive discussion in position paper ‘The Impact of Suffering on Medical and Halachic Considerations’, and endnotes 7, 12 there.
- See earlier endnote 15, and later endnote 24.
- The Patient Nearing Death Act, 5766 – 2005 establishes that one should withhold from treating a patient that is terminally ill and wishes that his life not be extended (see position paper ‘The Impact of Suffering on Medical and Halachic Considerations’, endnote 1). Article 8 of the law defines a terminal patient as a person who suffers from an incurable disease and whose life expectancy, even with treatment, is less than six months. Dementia is an incurable illness, but it is not included in this law since the life expectancy of the patient can be many years. The same issue exists with muscular dystrophy disorders. Furthermore, doctors nowadays tend to abstain from qualifying a life expectancy. There was an attempt to fix this article in the year 5781 by revising the law to establish any patient suffering from an incurable illness that significantly shortens their life as a terminally ill patient, even if their life expectancy is over 6 months or not assessable. The revision was not accepted. From a halachic perspective, there is no significance to the life expectancy definition of 6 months.
- We met with numerous experts in the field, and there is no consensus regarding this issue.
- The methodology of the poskim is explained in the Nishmat Avraham, Yoreh Deah, article 339:4, and The Medical Halachic Encyclopedia, volume 5, entry ‘Terminally Ill’, page 141-150. We’ve expanded on this in position paper ‘Treating a Patient with No Chance of Recovery’, endnote 12, and here we will summarize: According to Rabbi Waldenberg, one should not withhold treatment under any circumstances – even if he is therefore condemned to a life of suffering – and even if treatment must be administered involuntarily. See: Tzitz Eliezer Responsa, volume 5, Ramat Rachel, article 28 and others. ). Rabbi Yaakov Yisrael Kanievsky (Kiryana De’Igrita, Letter 190) opposes this position and writes: “Regarding the fundamental idea that one must prolong the life of a patient (even for only temporarily life), truthfully I have also heard this statement in my childhood, and I was unsure if this was reliable”, and according to him it is proper to withhold procedures aimed at extending the life of suffering of the patient. Rabbi Tzvi Shachter (earlier endnote 15) relies on the words of Rav Kanievsky and rules that anyone who has lost the will to live and desires that his life not be prolonged – does not obligate life-saving measures under the category of pikuach nefesh (unless it is evident that in this case the majority of people would disagree with his decision). He disagrees with the division between types of patients that Rabbi Shlomo Zalman Auerbach qualifies. According to Rabbi Yosef Shalom Elyashiv (see Nishmat Avraham, ibid.), withholding treatment is permissible in cases of suffering, and therefore treatment of anyone of which it is unclear whether they are suffering obligates full treatment, including CPR, to prolong their life. Between these two opinions is the opinion of Rav Feinstein (Igrot Moshe Responsa, Choshen Mishpat, volume 2, articles 73-75; ibid., Yoreh Deah, volume 2, article 174) and Rav Auerbach (Minchat Shlomo Responsa, volume 1, article 91:24). According to them, one may withhold from some procedures when the patient is suffering, and in certain cases where there is no chance of recovery. The Nishmat Avraham (ibid.) summarizes the position of Rabbi Shlomo Zalman Auerbach (in the aforementioned responsum and oral responsa) and establishes that one must differentiate between treatment of issues originating from the terminal illness of the patient and treatments of unexpected complications that are caused by other factors. If, for example, cardiac arrest or respiratory failure are expected pathological results of the disorder, there is no obligation to perform CPR, but one must treat other complications caused by other disorders – if the treatment is not painful in its own right.