Who is making decisions for you booklet

Who iDsfeomcriasykiooinung?s

A Guide for Patients Chayim
and their Families. Aruchim

‫חיים ארוכים‬

Culturally Sensitive Healthcare Advocacy

Court of Protection

The Court of Protection makes decisions and appoints deputies to act on behalf of
people who are unable to make decisions about their personal health, finance or wel-
fare.

The Court of Protection
Email: [email protected]
Telephone: 0300 456 4600
Monday to Friday, 9am to 5pm
Emergency applications only - out of office hours
Telephone: 020 7947 6000

FOR ADVOCACY SUPPORT:
CHAYIM ARUCHIM TEAM: 0161 740 1877 or 07974837494
IN AN EMERGENCY: MISASKIM - 07548730002

Looking after the Jewish Patient
Guidance for Adult Patients and their families in Crisis

Medical Situations

Introduction:

The NHS is placing a strong emphasis on improving the quality of End of Life
care. This can be a very difficult and emotive time for patients and their families.
It is further complicated when families are concerned that decision making at this
crucial time should be consistent with their beliefs as an Orthodox Jew.
All patients have legal rights such as the European Human Rights and the Mental
Capacity Act (2005). This booklet helps you to understand more about a patient’s
rights in health and care decision making particularly if they are no longer able to
make decisions for themselves. It will help you to communicate with hospital
staff to ensure that the patient’s basic needs and wishes are met and that care is
halachically correct.
There are 3 key areas of concern that an Orthodox Jew needs to be particularly
aware of within an End of Life care pathway:
1. How information is presented to a patient
2. Decisions around withdrawal of fluids and nutrition
3. Do Not Attempt Resuscitation instructions.

How can Chayim Aruchim help you?

Chayim Aruchim takes its direction from a Rabbinical board of senior Rab-
bonim both in the UK and the USA. The Chayim Aruchim team is also
supported by leading clinical and legal specialists who are expert in End of
Life Care. All Chayim Aruchim staff will receive background training from
these experts so that they have a strong understanding of key relevant clini-
cal, legal and Halachic concepts. They will be accountable to a Rabbinical
board of senior Rabbonim.

Chayim Aruchim empowers the patient and family to arrive at a decision
that is right for them. If the family wishes they can participate in meetings
with clinicians and other hospital staff , and relay any questions to a Rov of
their choice.

Specifically Chayim Aruchim will assist with:

 Helping families clarifying medical facts
 Helping families formulate their Halachic questions
 Explaining the medical situation and options to the family’s choice of

Rov
 Helping the family get a timely response from Rabbonim expert in

this field
 Explaining the Halachic psak to the family and supporting them
 Navigating the system to protect the patients rights to decisions
 Avoiding confrontations with hospitals and providers
 Working with hospitals and health providers to develop culturally

sensitive care plans.

Jewish Attitudes to End of Life Issues

The following are some key statements to use when speaking to health professionals that will
help in explaining the Jewish ethical approach to Health and Care decision making.

 TliJfheewi.ssrdeqouniroetsotwhenmthteoirmbaokdeyebffuotrtasretogkueaerpdiaalnivseo,vdeerstphiteeirabpoodoyraqnudalsiotyulo.f
 gJeenwdieshr, lpahwysdiocaels onromt aelnlotwal dabisiclirtiym. ination in health care based on age,
 ntNhuoetrtrheitiianorgne,mnooaxyyrigbsekensdotoornttehreteoapthmaateisentnetnst.sduecahthas–ainntcibluiodtiincgs,wdiitahbdertiacwmaleodfs wwahteerre,
 eEvaecrhyfraimskilbyeinseefintcdoeucriasgioend ctoarceofunlslyulftoar cHoamlapcehtiecnitmRpalbicbaitiwonhos. can assess
 smAsuioefRnfneastrbsitnbotghi awoptirrlhloraiavsvlikewd.easmypsaaitlnal kcrehealaineccvceoinsugnofttrsoeufactamcepesasnttiaesn.ndSt’ismmpaialyainrilnyovrwolsivutehffae‘hdriednrigotiiocinn’ atdrleeacit--
 IbtyisshaogratiennstliJfeew. Tishheertehfoicrse tionfcoarumseataiopnamtieunstt tboelopsreeshenopteedacsairtefmulalyy.there-

Yossi is a low functioning young man with Downs
Syndrome. He developed serious complications
following a bout of pneumonia and required a
ventilator. His family explained that as an Orthodox
Jew it would be against his value system for any

treatments to be withdrawn.

Presenting Information to the Patient

The NHS promotes full disclosure to patients of their treatment and condition
which can be problematic as according to Jewish principles, information should be
presented to sustain hope and avoid risk of despair leading to the patient giving
up and shortening life. Patients and families should ask that all copies of clinical
correspondence or discussions are first directed to the next of kin/patient repre-
sentative. It is helpful to explain that this request is due to faith considerations.

Withdrawal of Fluids and Nutrition

Under the latest guidelines , clinicians are encouraged to provide nutrition and hydration, espe-
cially when the family seeks this. There is a distinction between Artificial Nutrition and Hydra-
tion (ANH) and natural intake of food and drink. ANH is classified as a treatment and is subject to
clinical decision protocol, whereas food and drink is considered a basic human right - and can never
be withdrawn.

Clinicians may suggest that there is no evidence that hydration is life prolonging, but Halacha man-
dates this where not contra indicated.

If the patient is not able to eat or drink for themselves, nutrition and hydration may be provided
through different methods. Nutrition is often given as glucose in a solution that may be adminis-
tered through a gastric nasal tube or an intravenous (IV) drip. The solution which is usually a saline
solution provides hydration. Saline solution alone will not provide the necessary calories to sustain a
patient. Occasionally there may be clinical reasons not to do give fluids. It is important to have open
dialogue about this. For example; Edema (Accumulation of fluid) may need careful monitoring and
guidance from Chayim Aruchim to manage. Should the clinician recommend withdrawal or with-
holding of nutrition, hydration or treatment then families
should always seek full explanations for the rationale.
Families have a right to be involved in these decisions and
to have their views considered. A Rabbi should be included
in discussions as to the appropriateness of withdrawal . If
a patient has completed a Halachic Living will which in-
cludes a statement that he wishes to be sustained by
fluids and Nutrition, withdrawal can be challenged.

For Consideration

Is patient on end of life / palliative care?
 aIwthfnirytoohetuhst,gehherenptpshruaaertcheWtiwptiaaaorytndieeonMrrtw/nanohfataomgsieusirlry,neMouittnaiidtsnrevoaronpstl,pvaroneorddpdirpniiroaetttcheet,nelyatpisatkalotiiiestfhsnpuetasetcsico.eannIrfsteut.chlTateanhnfiabts.memirlaeyyasisbseensosdetodnhebapypy
Is patient receiving hydration?
 If not, ask if there is an alternate route of delivery (ex gastric line)
 eInfeyregsy, does it contain nutrition ex glucose? Saline does not provide calories or
Is patient self-feeding limited?
 Imf eytehso, dcodnirseidcetlryifinatpoptrhoeprsitaotme afocrh.nTashails/gmaastyrirceqliuniereora PbEesGt ifneteedrewsthmicheeitsinagf.eeding
 Ithf enopta,tmienotn.itor patients intake of fluids and any food to ensure adequate calories for
Has a DNAR instruction been issued?
 hwIfaiysvheeset,sh/diJoseewdseistchhisiisLoapnwur?tepDviaeitswiceuendsts.awt irtihskleoafdncoltinbieciinang arensdusRcaitbabteidifiinnadcocuorbdt.anFcaemwiliieths can
Is medication being provided for necessary treatment or if infection present?
 Isfupnpoot,rtquoergstainoinsasttiaofnf. .Ask for a second opinion or request support from community
Are Advance Planning documents (ex LPA, living will) noted in files?
See further for sample documents and suggested comments
Does patient have mental capacity?
 If yes – has patient been consulted about their treatment?
 rIfepnroets,ehnatastaivbeses(tifinatpeprleisctabmlee)eting been held for decisions including designated

IwIunswatureoadrnlelmdysteagrmterwteosehnitytitnoeDgvraeedrvyiies3wndotahtyisgs…ewttIiinthwgialdliBaaeslyksstitsheHe

If there seems to be an 'impasse' with no agreement
between patient and clinicians, this may need to be
resolved through the Court of Protection.

Best Interest Decisions

Legally, a patient (18:) may make his own decisions providing the patient
is determined to have mental capacity. A Best Interest meeting is the pro-
cess for making decisions for patients who are deemed not to have mental
capacity. It is an objective way of assessing both the wishes and needs of a
patient and coming to a 'best interest decision'.

Mental Capacity is a term that describes whether the patient can understand, retain
and process information. It is assessed through a standard test which is usually done
by a health professional or social worker. Legally, family members have to respect a
mentally capable patient’s decisions even when they appear unwise. For patients who
fail a mental capacity test, there is a process that has to be followed under the Mental
Capacity Act 2005 around determining the ‘best interest’ of the patient. Clinicians are
required to follow this process when making decisions such as around treatment or
moving patients to another setting.

 BwehsetnInatneriemstpomretaentitndgsecmisaioynbheaisnittoiabteedmbaydaen. yTohneey imnvuosltv;ed with the patient
 have multidisciplinary input (clinical, family, social worker etc)
 PtThaaarkekdefeecaraacrpceccadoocuuiPtnnyrti.tooTorfifhtvyiaisnefwwoyrsowuCorlfiadtrtreeeinnl/actolTiurvhdesiestnaaoktnerindaagndwAyviosahhnneeecasedinoddtfieortrechecuestmtipveeedant(iitenJ.enwtthimeshapdLaetiivewinnhtgiwlWeetlihflale)ryeo.r a

 IRnacblubdi eoranfaymoniley tmheempabteirenatsmpearythhaevLeivreinqgueWsteildl. to be consulted - such as a
 Not allow Age, appearance or behaviour as a basis for decision.
 Ctuodnessider Beliefs, views and preferences of patients—including faith atti-
 MBikayurinCvhoolvleima opratoiethnetraidnvdoicvaidteuasul ch as a member of Ezra U’Marpeh,
 TanakdeWaehlfoalrisetiacssveiseswmoefntthoef paadtviaennttasgneeseadnsdindviosalvdivnagnataMgeesd. ical, Emotional

aIstigoeinsr ioomfrptshoeenrtimaonretecttloiinnrigce,aaallismseeactnohanagdtewro.hpienreiotnheshpoautilednbteosrofuagmhitlyfraorme utnhheacplipnyicwiainth, wthaerddemcai-n-
Ipnrottheecteiovnenftotrhraetsonloutcioonns.ensus is reached, the case should be referred to the Court of

Advance Care Planning Documents

Advance care Planning documents capture a patient’s preferences, wishes and
feelings that decision makers must take account of should he lack capacity. The

Jewish Advance Directive / Halachic Living will is an example of an ad-
vance planning document. It closely follows the Mental Capacity Act
(2005) which highlights what clinicians must consider when making

decisions for a patient that has lost capacity.

6) He must consider, so far as is reasonably ascertainable…
wa)riTttheenpsetartseomn’esnptamstaadnedbpyrhesimentwwhiesnhehseahnaddfecealpinacgisty()a.nd, in particular and relevant
cba)pTahcietyb,ealniedfs and values that would be likely to influence his decision if he had
c) The other factors that he would be likely to consider if he were able do so.

(v7ie)wHseofm…ust take into account, if it is practicable and appropriate to consult them, the
ao)raonnyomnaettnearsmoefdthbyatthkienpde,rson as someone to be consulted on the matter in question
b) anyone engaged in caring for the person or interested in his welfare,
c) any donee of lasting power of attorney granted by the person, and
d) any deputy appointed for the person by the court

masetnotiwonheadt winousuldbsbeectiinonth(e6)p.erson’s best interest and, in particular, as to the matters

The Halachic Living Will allows the patient to state he is Jewish and wishes to be
treated in accordance with Jewish Law and custom. It allows designation of a
consultee to be consulted to determine Jewish Law and custom. It is an important
document to ensure decisions are taken in consultation with Halacha.
Other care planning documents include the Preferred Priorities for Care or the
Thinking Ahead documents. Samples are included below with suggestions for the
The kInintedrolifnkcoFmomuenndtasttihoant –coNulWd bEeningclalunddedB.ranch

400-404 Bury New Road, Salford M7 4EY

Tel: 0161-740-1877 Fax: 0161-792-0055 E-mail:

[email protected]

Best Interest Decisions

Legally, a patient (18:) may make his own decisions providing the patient
is determined to have mental capacity. A Best Interest meeting is the pro-
cess for making decisions for patients who are deemed not to have mental
capacity. It is an objective way of assessing both the wishes and needs of a
patient and coming to a 'best interest decision'.

Mental Capacity is a term that describes whether the patient can understand, retain
and process information. It is assessed through a standard test which is usually done
by a health professional or social worker. Legally, family members have to respect a
mentally capable patient’s decisions even when they appear unwise. For patients who
fail a mental capacity test, there is a process that has to be followed under the Mental
Capacity Act 2005 around determining the ‘best interest’ of the patient. Clinicians are
required to follow this process when making decisions such as around treatment or
moving patients to another setting.

 BwehsetnInatneriemstpomretaentitndgsecmisaioynbheaisnittoiabteedmbaydaen. yTohneey imnvuosltv;ed with the patient
 have multidisciplinary input (clinical, family, social worker etc)
 PtThaaarkekdefeecaraacrpceccadoocuuiPtnnyrti.tooTorfifhtvyiaisnefwwoyrsowuCorlfiadtrtreeeinnl/actolTiurvhdesiestnaaoktnerindaagndwAyviosahhnneeecasedinoddtfieortrechecuestmtipveeedant(iitenJ.enwtthimeshapdLaetiivewinnhtgiwlWeetlihflale)ryeo.r a

 IRnacblubdi eoranfaymoniley tmheempabteirenatsmpearythhaevLeivreinqgueWsteildl. to be consulted - such as a
 Not allow Age, appearance or behaviour as a basis for decision.
 Ctuodnessider Beliefs, views and preferences of patients—including faith atti-
 MBikayurinCvhoolvleima opratoiethnetraidnvdoicvaidteuasul ch as a member of Ezra U’Marpeh,
 TanakdeWaehlfoalrisetiacssveiseswmoefntthoef paadtviaennttasgneeseadnsdindviosalvdivnagnataMgeesd. ical, Emotional

aIstigoeinsr ioomfrptshoeenrtimaonretecttloiinnrigce,aaallismseeactnohanagdtewro.hpienreiotnheshpoautilednbteosrofuagmhitlyfraorme utnhheacplipnyicwiainth, wthaerddemcai-n-
Ipnrottheecteiovnenftotrhraetsonloutcioonns.ensus is reached, the case should be referred to the Court of

Do Not Attempt Resuscitation (DNAR)

DNAR orders are commonly issued when a person is placed on an End of life Care Pathway. A
clinician will complete this instruction when he considers CPR to be inappropriate or if he
deems quality of life to be negligible. It should ALWAYS be discussed with the patient /
family and a family should try to ascertain the basis for the clinician’s decision (quality of life,
clinical factors etc).
Jewish Law (Halacha) recognizes that decisions of resuscitation are complex and numerous factors
have to be taken into account. These include the level of pain and suffering. However Jewish Law
does not differentiate between age, mental capacity and physical ability of the patient. It is
therefore imperative that a competent Rabbi or Halachic Authority (Beth Din lead by a Dayan),
should be consulted to make a case by case evaluation of a patients situation and the
appropriateness of resuscitation. They will take careful account of a clinician’s opinion. A Rabbi’s
involvement may also serve to mediate between differing views of family members and/or the
clinicians.

 A patient (or representative) has a right to be involved in assessing a DNAR instruction

 DNAR decisions must follow Best Interest principles and a Patient has a right to have his
faith values considered as part of the assessment.

 Ambulance Trusts will be notified of a DNAR which means a patient will not be
resuscitated by ambulance crew if discharged home and he/she suffers a cardiac arrest or
similar life threatening event.

Following one episode, her Dr discussed issuing a
DNAR. Although Rose protested as she had previ-
ously been successfully resuscitated, the Dr con-
vinced her that CPR may cause distress and prob-

ably be unsuccessful. She later expressed her
doubts about a DNAR to her children, who con-
sulted with the ward manager to have the decision
reviewed with another clinician. Rose preferred to
have CPR attempted unless it would be clearly

unsuccessful.

The following guidance may be helpful from the Greater Manchester &
Cheshire Cancer Network Do Not Attempt Resuscitation (DNAR)
Adult Policy

Difficulties of deciding a DNAR order:

Some patients and/or relatives may ask for CPR to be attempted, even if the clinical
evidence suggests it would not provide any overall benefit. A sensitive discussion
should take place to convey a realistic view of the outcome of CPR and also to further
discuss the proposed plan of care. It may be appropriate to involve a second medical
opinion in these circumstances.

If patients still request that a DNAR Order is NOT made, this should usually be
respected. It may be the patient has decided that the quality of life that can be
reasonably expected is acceptable to them.

These situations are a potential source of confusion as doctors are not compelled to
give treatment contrary to their clinical judgment. In the unusual circumstance in
which the doctor responsible for the patients care feels unable to agree with patients’
decision a second opinion is recommended. Transfer of care to another doctor or
team can be considered if there is still lack of agreement and it is feasible. In
exceptional circumstances it may be necessary to seek legal advice.

Suggested Statements for a Care Planning Form

(The text that is circled are examples of the type of statements you can use to help
staff to understand and comply with your wishes, preferences and religious values)

Thinking Ahead—Advance Care Planning Discussion

I do not wish to have any post mortem procedures performed including an autopsy
or organ removal. I do not wish to have a DNAR offered to me
Yes, helby spouse / GP/ Care Home

I wish my care to adhere to my Jewish values and customs. I do not want ANH or medication
withdrawn without consultation. Please see my Advance Decision document for who I wish

to be consulted in deciding my treatment or changes to care.
NB See also any separate DNAR/AND or ADRT documents.

Guide to Common Concerns

Do learn as much as possible about your condition in order to get the
best possible care. If necessary, designate a family member to oversee
your care and treatment if you are unable to do so yourself. It is
important for the patient and/or the designee to learn as much as
possible about the condition, to help get the best possible care, to
learn about the Halachic ramifications of a selected course of care, to
make decisions and interact with the medical professionals who are
directly responsible for the care.

Do choose a Rabbi to be your Halachic advisor. In the event of illness
which chalilah, in the worst case scenario, may require end-of-life
decisions, it is incumbent upon patients and their families to
familiarise themselves with all potential options and to present these
options to the family Rav, Posek or a competent Halachic authority
for guidance.

Do not relinquish your right to treatment without fully understanding
what your treatment options are and how they may help you.
Patients have significant rights with regard to their medical care.
Health care staff are required to take into account patients personal
and religious values and must encourage and assist in the fullest
possible way exercise of these rights. To the extent that a patients
religious beliefs mandate a certain course of treatment, the patients
family may need assistance to have the hospital or provider
accommodate those wishes.

Do not sign any advance care directives, or any such directives
obtained from a lawyers office or other sources without consulting a
Rav. Do sign a Halachic Medical Advance Directive which will protect
your Halachic rights. Advance directives typically include DNAR (Do
Not Resuscitate) orders. Be careful not to make decisions about any
of these matters without consulting your Rav.

Do not accept an offer from your health professional to discuss end-
of-life options unless your Halachic advisor is involved in the
process. Patients diagnosed with a terminal illness are usually
offered information and counselling on the available options for
palliative and end-of-life care. If you do choose to accept the offer, it
is vital that your Rav be involved in the discussion.

Do not choose palliative care and/or hospice services unless the
provider respects Halacha and considers the Rabbi an integral part of
the team. If you choose palliative care and/or hospice services
according to Halacha, then nutrition, hydration and other Halachic
requirements should be provided. It is important to choose a
palliative care/hospice that is sensitive to the needs of the religious
patient, encourages the patient/family to consult with their Rav or
Halachic authority, considers the Rav an integral member of the
team, will consult with your designated physician regarding the
dosages for morphine or other pain killers, and where there is
ongoing supervision to assure continued adherence to Halacha.

Do call Chayim Aruchim or other advocacy support.

For appropriate counselling and advice that is based on Halacha, or
for a free copy of the Halachic Advance Medical Directive, please con-
tact the Chayim Aruchim team for Culturally Sensitive End of Life
Advocacy and Counselling.

The Interlink Foundation – NW England Branch

400-404 Bury New Road, Salford M7 4EY
Tel: 0161-740-1877 Fax: 0161-792-0055 E-mail:
[email protected]