End of Life Care

Topic Progress:

What is End of Life Care?

> Patient centred care focusing on quality of life: managing symptoms, providing comfort and assistance

> Used when there is medical consensus that there is an irreversible life threatening disease process

> Includes help with emotional and mental health needs of a patient and their family

> Essentially the same as Palliative Care

There’s only one chance to get it right

– Fitzsimons

A Good Death

This depends on the views of an individual but patient priorities include:

  • Freedom from pain and other uncomfortable symptoms
  • Avoiding inappropriate prolongation of dying
  • Relieving burden on others
  • A degree of control, autonomy and independence
  • Respect of their wishes including appropriate limitations of use of aggressive treatments

REF

The Practicalities

WHO IS IT FOR?

Patients for whom there is medical consensus that they have an irreversible life-threatening condition.

It is an inclusive and collaborative decision involving the patients family.

All of the neurological emergencies in this course may end in this way.

If there is sufficient uncertainty about prognosis, or if there is disagreement between treating specialists about prognosis, usual practice is for more time to be given.

When prognosis is uncertain and therapies entail suffering, the pros and cons of each therapy must be weighed up with the patient’s wishes and experience in mind.

WHEN Does it Start?

When it becomes clear that a condition is irreversible and the family are prepared for the change in focus of care.

This entails all the required investigations to confidently reach this conclusion, conversations with the involved specialist teams and a conversation with the family.

CONSIDER ORGAN DONATION

Always think of organ donation when a ventilated patient is dying in ICU

> Care of a dying patient and their family involves respecting their views on organ and tissue donation

> Notify a Organ Donation Specialist Nurse to discuss suitability as soon as they are identified as for end-of-life care

> The next section covers this in more detail

Breaking Bad News to Families

Who should attend the Family Meeting?

Senior treating Doctor

Nursing caring for Patient

Social Worker

+/- Donation Specialist Nurse

An Approach

> Engage and empathise with family

> Explore how they are

> Give space for them to talk

> Be open, honest and compassionate

> Check what they understand already

> Recap events in simple terms that won’t confuse or overwhelm with information

> Involve other teams if the are available

> Use the word “die” rather than ambiguous euphemisms

> Give time for this to register

> If organ donation is a possibility, ideally separate that discussion to avoid overwhelming the family

Here’s an example:

ETHICS AND LAW

Withholding and Withdrawing

Care is never withheld or withdrawn. 

> This is important. Good end-of-life care is every bit as important as many treatments we offer.

> Care is never withdrawn or withheld

> Non-beneficial treatments often are.

When patients describe a “good death” they say they want to avoid prolongation of dying REF

In Australia, NZ, the UK and the USA there is agreement that where treatment is not going to succeed (deemed “non-beneficial”), it should be withheld or withdrawn REF

There is a wide variation in practices around withholding and withdrawing treatment across countries.

Australian Law

This information comes from an excellent resource authored by Professors Ben White and Lindy Willmott and Penny Neller. REF

> What is futile or non-beneficial treatment?

ANSWER

‘Futile’ treatment is not formally defined in law, and there is debate in the medical and legal professions about what ‘futile’ or ‘non-beneficial’ treatment means.

The term is commonly used to refer to treatment which:

  • Is not in the person’s best interests,
  • cannot achieve its purpose, or
  • is not clinically indicated.

It is sometimes referred to as ‘non-beneficial treatment’ or ‘potentially inappropriate treatment’.

Clinicians decide whether or not treatment is futile on a case-by-case basis. Factors that will be considered include the person’s diagnosis and prognosis, the person’s treatment goals and whether these can be achieved, treatment alternatives, and risks and benefits of these alternatives.

> Examples of futile or non-beneficial treatment

ANSWER

There are different categories of futile or non-beneficial treatment.

One is ‘physiological futility’, where treatment will not provide any physiological benefit to the person. This might occur where a person is imminently dying and so unwell that it is not possible for cardiopulmonary resuscitation to work. Cases of physiological futility are rare and have not been before Australian courts.

More common is where treatment might possibly work but clinicians believe it is not worth providing. This decision might be based on treatment being burdensome with a low prospect of success, or bringing only a limited improvement in quality of life. This sort of decision involves subjective assessments, where clinicians might consider treatment to be futile but a person or their family may disagree. It has been these sorts of cases – involving more subjective assessments of futility – that have come before the courts. The case of Messiha v South East Health  is an example.

> Who decides whether treatment is futile or non-beneficial?

ANSWER

This decision is generally made by the person’s treating clinical team or medical practitioner on a case-by-case basis.

When deciding whether treatment is futile or non-beneficial, it is important for clinicians to discuss this with the person (if they have capacity) or the person’s substitute decision-maker (if the person does not have capacity) in order to:

  • find out the substitute decision-maker’s understanding of the person’s wishes (or the person’s wishes if they have capacity);
  • communicate the risks and benefits of continued treatment;
  • explain any reasons why the treatment is considered futile; and
  • come to a shared view about the options.

If there is a dispute e.g. a substitute decision-maker disagrees that treatment is futile or non-beneficial, dispute resolution should be initiated within the hospital or health service. If the dispute cannot be resolved, a Supreme Court or tribunal may decide whether treatment should be provided.

> When is it lawful to withhold or withdraw futile or non-beneficial treatment?

ANSWER

When a person has capacity, a clinician may withhold or withdraw treatment they consider is futile or non-beneficial.

Generally, when a person does not have capacity, it will also be lawful for such treatment to be withheld or withdrawn. However, the law in Queensland is different. Find out more at Queensland Treatment Decisions.

For more information about withholding and withdrawing treatment in each jurisdiction visit State and Territory Treatment Decisions.

> Can a person or their substitute decision-maker demand treatment be given, even if a clinician believes that the treatment would be futile or non-beneficial?

ANSWER

No. Under the common law, a person with capacity cannot demand treatment be given to them, and clinicians have no obligation to provide treatment that is futile or non-beneficial.

This is also the case when a person does not have capacity. An Advance Care Directive cannot require that futile treatment be given, and a person’s substitute decision-maker cannot demand such treatment. However, the law in Queensland is different. Find out more at Queensland Treatment Decisions.

Some States and Territories also have legislation which clarifies this. For example, in Victoria, the Medical Treatment Planning and Decisions Act 2016 (Vic) section 8 states that a clinician cannot be compelled to administer futile or non-beneficial treatment, and that nothing authorises the making of an Advance Care Directive or a decision (by a medical treatment decision-maker) purporting to compel a clinician to provide such treatment.

> Is consent from a person or their substitute decision-maker required before futile or non-beneficial treatment can be withheld or withdrawn?

ANSWER

A clinician does not need to obtain consent from a person or a substitute decision-maker to withhold or withdraw futile or non-beneficial treatment. However, as a matter of good medical practice, a person or their substitute decision-maker should always be involved in treatment decision-making, including when clinician’s think treatment is futile.

The law in Queensland is different when a person does not have capacity. Find out more at Queensland Treatment Decisions.

> What if a person or their substitute decision-maker disagrees with a clinician’s decision that treatment is futile or non-beneficial?

ANSWER

If the person, their family or substitute decision-maker, or another clinician disagrees with a clinician’s view that treatment is futile or non-beneficial, they can challenge it. This may involve seeking a second opinion from an independent clinician or health service. Hospitals often have complaints processes to address disagreements, for example, about the benefits of proposed treatment. In some cases, the Supreme Court or a tribunal may be asked to decide if treatment is futile.

The issue of futility is considered in the cases of Messiha v South East Health and Northridge v Central Sydney Area Health Service.

> How have Australian courts considered futile treatment?

ANSWER

In rare cases, disputes about whether or not treatment should be provided have been considered by Supreme Courts in Australia. The courts have decided based on the person’s ‘best interests’ and have considered similar factors to clinicians including:

  • medical evidence regarding the person’s diagnosis, prognosis and treatment options;
  • whether the requested treatment is overly burdensome (so that the burdens of treatment outweigh any possible benefits);
  • views and wishes of the person about treatment (and, to a lesser extent, views of the person’s family); and
  • quality of life of the person if they receive treatment (which the courts have considered particularly when the person has significant cognitive impairment).

The courts have also stated that the interests of others (including organisations such as the wider health system) and resources are not relevant to a best interests assessment.

Courts may also consider the process undertaken by the clinician in deciding that the treatment is futile or non-beneficial. This would include whether they consulted with other clinicians, acted in accordance with relevant clinical guidelines, and engaged with the person or their substitute decision-maker. In most cases, the courts have deferred to clinicians’ decisions about treatment, even when the person’s family has strongly opposed them.

Not for resuscitation

Once it is discussed with the family that the focus is now End-of-life care, performing CPR and ALS when they die is obviously not appropriate.

The order “Not for resuscitation” should be documented.

Analgesia and Sedation in EoL Care

The principle

To provide sufficient analgesia so the patient is not suffering

The Law

The doctrine of double effect has been adopted by the common law in end of life treatment.

It is the ethical and legal justification for using medications such as opioids in end-of-life care, when the intent that they are being used is primarily to relieve pain and suffering, even if an unintended consequence is shortening a patient’s life. REF

This principle distinguishes euthanasia from palliative care based on the intentions of the physician’s use of the medication.

More on this doctrine
The essence of the doctrine of double effect is that an act performed with good intent can still be moral despite negative side effects.

In the context of end-of-life care, this can happen when four conditions are met:

1. Administering palliative medication is not, in itself, immoral;

2. The intention is to relieve pain, not to hasten the patient’s death;

3. The relief of pain is not achieved through causing the patient’s death; and

4. Proportionally, the need to relieve pain is such that it warrants accepting the risk of hastening death.

In the USA, the concept of double effect has been upheld by former Chief Justice John Rehnquist in this statement: ‘‘It is widely recognized that the provision of pain medication is ethically and professionally acceptable even when the treatment may hasten the patient’s death if the medication is intended to alleviate pain and severe discomfort, not to cause death.’’ (Vacco v Quill 117 S. Ct 2293, 1997)

In Australia, the double effect principle is supported by the AMA REF

Key elements which must be met to be within the law are:

> The intent of the prescribed medications must be to relieve pain rather than kill

> Context specific: only applies if a patient is near death

> The medications and doses used should be considered “good medical practice”

What's this?
meaning good medical practice nationally, having regard to recognised medical standards, practices and procedures and ethical standards of the medical profession in Australia.

An Approach

Prescribe opiates to be titrated to specific physiological parameters that represent pain or distress:

> Respiratory rate < 20 breaths per minute

> Heart rate  < 100 bpm

The amount of opiate required will depend on:

  • The degree of pain or discomfort
  • The patients age, sex and weight and organ function
  • Their existing tolerance of opiates

Typical adult dosing may be:

2-10 mg IV morphine

Followed by IV morphine infusion 0.05–0.5 mg/kg/h

Fentanyl or oxycodone are accepted alternatives

In the context of renal failure:

Hydromorphone 0.5–4 mg IV bolus

Followed by an infusion of 0.5–10 mg IV/h titrated to comfort

Benzodiazepines such midazolam may be used for anxiety

Agitated delirium can be managed with neuroleptics such as haloperidol

REF

There is no ceiling to the amount of comfort care medication that can be applied if used with the principles described above REF

Other medications

Medications that are not primarily prescribed to alleviate pain and suffering should be ceased

Some medications, such as anti-seizure medications should continue, to avoid situations a patient and their family may find distressing.

Invasive lines and Tubes

All invasive lines and tubes should be reviewed and removed if their purpose is not for providing symptom relief and comfort

This includes:

Endotracheal tube or tracheostomy tube

Arterial line

Central line

Vas Cath

EVD

Nasogastric Tube

Indwelling urinary catheter

Non-Essential Treatments and Monitoring

Common ICU treatments and monitoring should all be reviewed and stopped if their purpose is not for providing symptom relief and comfort

This includes:

Bloods tests including ABGs

CXR

IV antibiotics

IV Maintenance Fluids

Vital sign observations

Vasopressors and inotropes

Oxygen

TEDS and calf compressors

Care of the Family

Holistic care of the patient means treating their family

Social Support

Social workers are essential team members in end-of-life care

Families need support with travel, parking, letters of support, finances and many more logistical issues

Communication

> Ensure privacy and continuity of communication.

> Psychological morbidity is reduced when more time is spent with families during conferencing

> Gaining insight on the values of families and their specific needs is essential

Patient / Family Contact

> Families should be allowed to stay with their relatives at during end-of-life care, with breaks to  allow for essential nursing care

> Some families will be grateful for even closer contact with their loved one; this may even include having the patient’s partner or children in bed with them

Thoughtful Acts

Families often appreciate special thoughtful acts such as:

> Playing music in the room that the patient likes

> Creating hand prints of their relative before they die

> Cutting some of the patient’s hair for them to have a memory

> Consideration of cultural, spiritual and religious needs is essential at the end of life.

Religious and Cultural Considerations

> Explore what religious or cultural arrangements the patient or their family would want and facilitate

> Recognise that certain cultures will feel differently about death and have specific needs

Awareness

> Other ICU staff and visiting teams should be updated on what’s happening

> Signs on a patient’s room door can help make all staff aware a patients is having end-of-life care

> Signs on door so people know what’s happening

Psychological support

> Should be offered to distressed families

Bereavement support

> Following death this can make a tremendous difference to how relatives cope.

> See more about memory making for relatives here

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