Decision making at end of life
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Initiating end of life discussions with your patient

Should I tell my patient that they may die soon, or is this inappropriate and likely to lead to complaint or dispute?

  • All patients have a right to be informed about their condition, prognosis and their treatment options, including their burden versus benefit, to an extent which is acceptable to them.
  • Patients also have the right to refuse receiving details about their prognosis.
  • Failure to disclose prognosis probably carries a higher risk of complaint.
  • Generally, sensitive and inclusive conversations with patients and families combined with thorough documentation reduce legal risk and potential for family complaints.
  • It is important clinicians do not make assumptions about what a patient might want to know in regards to their prognosis.
  • Asking the question would I be surprised if the patient were to die in the next 12 months? may help to decide whether a discussion should be initiated.
  • Here are some ideas about how you can initiate a conversation with a patient and/or their family

In the case of Margaret:

Margaret is an 82 year old patient and has heart failure. Her kidney function is worsening, and she has had three admissions to hospital this year. Her prognosis is poor, and death is likely within the next year. Neither her GP nor any of the doctors at the hospital she visits have discussed this with her.

  • Legally, Margaret has a right to know the prognosis and should be given the opportunity to know more. Margaret is also in a position where she can make plans for her future and should be encouraged to do so.
  • In the case that Margaret does not wish to know details about her prognosis and life expectancy, it may be possible to explore her wishes for future care using a hypothetical question. For example: “If you were ever to become more unwell in the future, how would you want decisions about your care to be made? Is there anything you would want us to know about your wishes?”
  • This may also be an appropriate time to initiate a discussion about Margaret’s preference for a substitute decision maker by asking her: “Who would you want to make decisions on your behalf if you were unable to speak for yourself?”
  • Some patients may prefer to delegate decisions about their treatment to their family and/or doctors. You should gently explore Margaret’s preferences for information and level of involvement in medical decisions and document this in her medical record. Sensitive and compassionate communication paced at a rate that the person can absorb is the key.

Resources for communication for end of life discussions:

Refusing life-sustaining treatment and the law

Can patients refuse life-sustaining treatment?

  • Competent adults can refuse medical treatment even if that treatment is necessary to keep them alive. NSW law recognises that this right extends to all medical treatments, including ventilation, cardio-pulmonary resuscitation (CPR), dialysis, antibiotics and artificial feeding and hydration: (an example of a case where these rights are discussed is Brightwater Care Group (Inc) v Rossiter: read a case summary or the full case).
  • A patient’s decision to refuse treatment and die is not the same as assisted dying or euthanasia which is illegal in NSW (see the case of H Ltd v J: read a case summary or the full case.
  • There are some scenarios where it is not lawful for a competent patient to refuse treatment, for example when patients are subject to mental health orders. The rights of children to refuse treatment are discussed here.

In the case of Margaret:

Margaret has been managing at home with the support of her daughter and community services. Her ankles start swelling and she finds it hard to walk around. She finds it difficult to get around, especially to the toilet, so she stops taking her diuretic. She becomes very breathless and calls the ambulance who takes her to her local Emergency Department. Her kidney function has deteriorated to the point where she urgently needs dialysis. Margaret understands the information given to her about her options, and is unsure whether she wants to start dialysis. Her family meanwhile is keen for her to accept it.

  • If Margaret has shown that she has capacity to make decisions about her health; then she may lawfully refuse treatment, including life-sustaining treatment, if she chooses to do so.
  • In the case that she does refuse treatment, her senior treating clinician is responsible for ensuring that steps have been taken to offer her the information to make her decision and that her decision is documented in her medical record. The senior treating clinician may also consider determining a timeframe with Margaret in which her decision may be reviewed.
  • Margaret can change her mind at any time, and revoke her previously stated wishes for any or no reason.
Making decisions when the patient lacks capacity

Does my patient lack the capacity to make treatment decisions?

  • All adults are presumed to have capacity unless the evidence in front of you supports otherwise
  • A person has decision making capacity if they can:
    • Understand the facts and choices involved;
    • Weigh up the consequences; and
    • Communicate their decision
  • For more information on capacity, click here.

Capacity Flowchart

Note: A person’s capacity can fluctuate over time. Determining capacity is decision-specific. If you are attending to a patient whose decision-making is in question you may need to decide frequently (each time a decision is needed) whether the person has capacity to make each and every decision. For more information see the Capacity Toolkit.

Who legally can make treatment decisions on a patient’s behalf when the patient no longer has capacity – who is the Person Responsible?

  1. An appointed guardian (including enduring guardian) with the function of consenting to medical and dental treatment. If there is no-one in this category:
  2. A spouse or de facto spouse (including same sex partner) who has a close and continuing relationship with the person. If there is no-one in this category:
  3. The carer or person who arranges care regularly or did so before the person went into residential care, and who is unpaid (note: the carer’s pension does not count as payment). If there is no-one in this category:
  4. A close friend or relative.

If none of these are available and the treatment you are proposing is neither minor nor urgent  (see here for more detail) an application to the Guardianship Division of NCAT should be made. The Guardianship Division of NCAT was formerly known as the Guardianship Tribunal.

Note: terms used such as ‘next of kin’, ‘contact person’ or ‘family’ on patient records does not necessarily correspond with the legally defined ‘person responsible’ and you should check by asking family members and following the hierarchy.

Person Responsible Hierarchy

  • Engaging other people or consulting someone who is not necessarily highest on the hierarchy may be important in building consensus around treatment decisions but it does not replace the need to consult the legally defined Person Responsible.
  • An attorney appointed under a Power of Attorney in NSW does not have the right to make health care decisions for a patient. Health care practitioners need to ask whether the Attorney was also appointed by the patient as their Enduring Guardian (an appointed guardian with health care functions) or by the Guardianship Division of the NCAT as a guardian, with the function (or authority) to allow them to consent to medical treatment.
  • A person appointed under a Power of Attorney may coincidentally be someone who falls into other categories in the Person Responsible hierarchy (such as a close friend or relative), and under this power as a Person Responsible might be able to provide consent. In any case the hierarchy would have to be followed and the person highest on the hierarchy consulted.
  • See here for terminology used in other States
  • If the patient is under the age of 16 years then generally, the parent or guardian would give consent – see Consent to Medical Treatment – Patient Information Policy Directive for more on this.

What can a Person Responsible consent to?

  • A Person Responsible can consent to active treatment on behalf of the patient (including palliative care).
  • There are a number of special treatments that a Person Responsible cannot consent to.

See more on levels of consent required for different treatments (urgent, minor, major, and special treatments) in the Person Responsible Fact Sheet.

Can the Person Responsible consent to withholding or withdrawing life-sustaining treatments?

  • Guardians (including Enduring Guardians) can consent to treatment being withheld or withdrawn if they have been expressly given such a power in their appointment. It is important to review the terms on which guardians are appointed before making a decision. Seek legal advice if you are unsure.
  • Where the treating team considers life-sustaining treatment to be of negligible clinical benefit, consent to withhold or withdraw treatment is not required from the patient or their Person Responsible (including Enduring Guardian). However, consultation with the patient and/or their Person Responsible is important in determining what is in a patient’s best interests.
  • Other Persons Responsible do not have the express power to consent to withholding or withdrawing treatment, but they should still be consulted when an end of life treatment decision is being made because they will be able to help the treatment team make a better assessment of the patient’s best interests.
  • A Person Responsible cannot give consent if the patient is objecting, unless he or she is a guardian authorised to do so.

What if the Person Responsible lacks decision making capacity or doesn’t want to make a decision?

  • If the Person Responsible lacks decision making capacity, the next person on the hierarchy will become the Person Responsible.
  • If a Person Responsible does not wish to make medical treatment decisions for a patient, this must be recorded in the patient’s records. If this happens, the next person on the hierarchy becomes the Person Responsible.

What if the Person Responsible is not acting in the best interest of the patient?

  • Make sure that you have given the Person Responsible all the information they need to make a good decision on behalf of the patient. Click here for a list of factors that should be considered when making decisions in the ‘best interests’ of patients who lack capacity.
  • If you still have concerns that the Person Responsible is not acting in the patient’s best interest; then you can make an application to the Guardianship Division of the NCAT for consent to treatment and/or for a guardian to be appointed. See here for more information about different application types.

What happens if there is no Person Responsible available?

  • If the treatment being proposed is not minor or urgent, then an application can be made to the Guardianship Division of the NCAT for the Tribunal’s consent to the treatment. If treatment decisions will be required in the future, you should consider making an application to the Guardianship Division for the appointment of a guardian with health care and medical and dental consent functions to provide ongoing substitute consent for the patient.

Do I have to consult the person highest on the hierarchy, or can I just seek consent from whoever is available at the time?

  • Under law (Guardianship Act 1987) health care practitioners have an obligation to consult with the person highest on the hierarchy.
  • If that person is not immediately available then efforts should be made to contact them for consent to treat.
  • Consulting with the correct Person Responsible is a legal obligation of all health care practitioners.
  • Explaining to family and other persons close to the patient the requirements of the Guardianship Act’s Person Responsible Hierarchy (Part 5) can help in diffusing any disagreements about who should act in the best interest of the patient.

What happens if the patient is objecting?

  • A Person Responsible (including a guardian or Enduring Guardian) cannot override a patient’s objections to treatment. An objection includes:
    • If the person indicates (by whatever means) that he or she does not want the treatment to be carried out, or
    • If the person has previously indicated in similar circumstances that he or she did not want the treatment and has not subsequently indicated to the contrary, and
    • The Person Responsible is aware, or ought reasonably to be aware, that the patient objects to the treatment.
  • It is an offence under the Guardianship Act for treatment to be carried out if the patient is objecting, unless:

In the case of Margaret:

Margaret ‘s condition worsens; she is confused and drowsy. A decision hasn’t yet been made about her treatment and the treating team is keen to put her on a palliative care plan and not start dialysis. The treating team go about getting consent by asking themselves the following questions:

  • If the senior treating clinician determines that Margaret does not have capacity to make decisions about her treatment, and there is no valid advance care directive in place, then her doctor would generally refer to Margaret ‘s Person Responsible for consent.
  • Given that the treatment plan being considered is ‘urgent’ (to ‘prevent or alleviate significant pain or distress’) under the Guardianship Act and that there is consensus amongst the treating team that a ‘palliative care plan’ is in her best interests, the treating hospital may legally progress with the palliative care plan without consent from the Person Responsible.
  • The senior treating clinician should consider and discuss a Resuscitation Plan to provide medically authorised clinical orders about appropriate use or withholding resuscitation and other related aspects of care. If there is disagreement, creating consensus within the treating team and with the Person Responsible or family should be sought.
  • If Margaret ‘s Person Responsible or family disagreed with the proposed treatment, the treating team should work with the family to build agreement on what is best for Margaret through a number of ways, including: careful, considerate communication; repeated discussions; allowing them time to discuss and consider; providing support from social workers; and the potential use of a second medical opinion.
Managing conflict

If there is conflict between the patient or Person Responsible and doctors’ advice, what should I do?

Is there consensus amongst the treating team?

It is crucial that health professionals work collaboratively with each other and with their patients and their families throughout all phases of end of life care. For more information about building consensus around treatment decisions, click here.

If the treatment is futile, can I just say no?

  • Health care practitioners are under no obligation to provide treatments that are futile, that is,treatment that is unreasonable and offers negligible prospect of benefit to the patient. Click here for more information about making decisions where treatment may be considered futile.
  • However, the senior treating clinician remains responsible for the process whereby a consensus about end of life decisions might be sought with the patient or his/her person responsible, clarifying prognosis and defining an appropriate course of action and treatment plan.

What can I do to reach agreement?

  • There are a number of ways in which you can build agreement on treatment or care decisions, they include:
    • Time and repeated discussion
    • Second medical opinion
    • Time limited treatment trial then review and renegotiation
    • Facilitation by another staff member
    • Patient Transfer

    For more information about building consensus around treatment decisions, click here.

  • If a patient lacks decision making capacity, the Person Responsible must be consulted and should be involved in all stages of resolving conflict.
  • As a matter of good medical practice, when decisions are made to withdraw or withhold life sustaining treatment in the best interests of the patient, the treating doctor should reassure family of the appropriateness of the decision. This is to reduce potential feelings of guilt that often ensues when families are made to think they have pre-emptively ended the life of their loved one.

Resolving EOL Conflicts

In the case of Margaret:

Margaret ‘s daughter, who is her Person Responsible, is distraught and upset about the impending loss of her mother. She says that she wants everything to be done for Margaret, including dialysis. The attending medical officer believes that Margaret ‘s daughter’s wish to start dialysis would not be in Margaret’s best interests, as her underlying heart condition and other co-morbidities suggest that dialysis will not likely improve Margaret’s survival or quality of life. Given the disagreement between what the family wants and the advice of the attending medical officer, relations worsen and Margaret’s daughter threatens to go to the media.

  • The treating team should try a number of things to build consensus amongst Margaret’s family about the decision not to treat. This may include having repeated discussions; using language that is careful and considerate; allowing time for the family to digest the information and discuss; the introduction of support from social workers or religious persons; and obtaining an independent second medical opinion.
  • Meanwhile, Margaret should be provided with relief from pain and other distressing symptoms and be provided with supportive treatment until a decision has been made.
  • If, after allowing time and repeated discussions the disagreement remains unresolved between Margaret family and the treating team, the senior treating clinician would inform senior hospital administration of the dispute. Further advice from the Director of Clinical Governance and the NSW Ministry of Health Legal & Regulatory Services Branch may then be considered.

More resources: