End of life in MND

End-of-Life Care

• Can end-of-life care happen at home?

  ✓Supports this

  “Planning to be cared for at home does not rule out moving to a hospice, hospital or care facility later if more support is needed.”

  Says outright that home care can stop being manageable for some people and that a move to a hospice, palliative care facility, hospital or aged care facility may then need to be arranged, so a change of setting is an expected possibility rather than a failure of the plan.

  For some people maintaining care at home may become too difficult and admission to a hospice or palliative care facility, hospital or a residential aged care facility may need to be organised.

  Caring for the carer

• Can end-of-life care happen at home?

  ✓Supports this

  “For many people, end-of-life care can be delivered at home.”

  Treats dying at home as a plan that services are expected to support rather than an exception, and describes stepping up home support as the end of life approaches so it can happen.

  Support services in the home may be need to be increased as end of life approaches, particularly if the person with MND has expressed a wish to die at home.

  Symptom management at end of life

• How are symptoms like breathlessness, anxiety, pain, and saliva managed at the end of life?

  ✓Supports this

  “Comfort medicines at the end of life are given by an experienced team at doses matched to the person's symptoms, with the aim of relieving distress.”

  Reproduces the EFNS guideline recommendation for treating breathlessness and pain in MND. It describes the same practice, titrating the dose against the person's symptoms, and states plainly that used this way these medicines rarely if ever cause dangerous slowing of breathing.

  Titrating the dosages against the clinical symptoms will rarely if ever result in life-threatening respiratory depression (GCPP).

  Guidelines for end of life care

• How are symptoms like breathlessness, anxiety, pain, and saliva managed at the end of life?

  ✓Supports this

  “Teams arrange medicines and a plan in advance so a symptom can be treated as soon as it appears.”

  Says the same for MND care in Australia, and covers the same symptom list: prescribers should think ahead about medicines for breathing, pain, saliva and anxiety before those symptoms worsen.

• How do palliative care, advance care planning, and end-of-life care fit together?

  ✓Supports this

  “Palliative care can run alongside the rest of someone's care from early in MND, rather than starting only at the end of life.”

  Makes the same distinction this answer is drawing, and gives it as a reason to raise a palliative approach early: doing so is what lets people see that palliative care and end-of-life care are not the same thing.

  Introducing the concept of a palliative approach to care early on may help people to better understand the difference between palliative care and end of life care.

  Initiating end of life discussion

• What does end-of-life care mean in MND?

  ✓Supports this

  “Palliative care in MND is not confined to the end of life and can be part of someone's care from much earlier.”

  Goes further and treats early referral as the standard, because MND is complex and moves quickly, with the palliative team reviewing periodically rather than arriving at the end.

  Due to the complex and rapidly progressive nature of MND, referral to a specialist palliative care service should be initiated early in the course of the disease with subsequent periodic review.

  Supporting end of life

• What does end-of-life care mean in MND?

  ✓Supports this

  “Understanding end-of-life care before it is needed can reduce fear and help someone feel more in control.”

  Gives feeling more in control as the reason for opening these conversations early, while the person still has the communication and thinking to take part and before anything is urgent.

  Providing the opportunity for these difficult conversations early on, before the person with MND has problems with communication or cognition and before the need is urgent, will help them to feel more in control and more able to focus on getting on with living.

  Supporting end of life

• What might the final stage of MND look like?

  ✓Supports this

  “Choking is very rarely the cause of death in MND, though choking episodes themselves can be distressing at the time, and teams plan ahead so that an episode can be managed quickly.”

  Singles this fear out and tells clinicians to correct it directly, because choking is not how people with MND usually die. The same page tells prescribers to consider anticipatory prescribing for breathing, pain, saliva and anxiety, and describes a just-in-case box of medication kept at home, so it treats planning ahead for these episodes as standard rather than something teams do not expect.

  It is important to reassure patients and carers that death from choking is rare.

  Symptom management at end of life

• What might the final stage of MND look like?

  iAdds context

  “In the final stage people commonly grow sleepier and withdraw, and for many the period is calmer than they had feared.”

  Does not describe the sleepiness, but reproduces the EFNS guideline recommendation that clinicians should actively tell people and their families that a peaceful death is the likely one, which is the professional counterpart of this reassurance rather than evidence for it.

  The likelihood of a peaceful death process should be communicated to patients and their caregivers/relatives (GCPP).

  Guidelines for end of life care

• What should family members know, and what support is there for grief?

  ✓Supports this

  “Bereavement support for the family is part of what palliative care and hospice services are expected to provide.”

  Says the same for MND care in Australia and puts it more broadly, as something to be offered to every carer rather than assessed for. It also notes that in practice services often fall short of this.

  Bereavement counselling and support should be offered to all carers.

  Carer and family bereavement

• What should family members know, and what support is there for grief?

  ✓Supports this

  “Palliative and MND teams prepare families for what is coming, what to do, and who to contact.”

  Treats preparing the family as part of the clinical job and gives the reasons: an unprepared family faces the shock of a death that feels sudden, which carries a risk of harder bereavement, and may call an ambulance not knowing what else to do. Elsewhere on the same page it calls an out-of-hours number and instructions for an emergency essential.

  Preparing the family and providing additional support may help prevent the shock of an 'unexpected' death (with the risk of more severe bereavement) or the family inadvertently ringing an ambulance after the patient has died at home.

  Symptom management at end of life

• Who do we contact if symptoms change quickly or we are worried?

  ✓Supports this

  “Knowing in advance who to call when something changes suddenly is worth arranging before it is needed.”

  Puts this among the things that must be in place for a person with MND approaching the end of life, and is explicit that the number has to cover nights and weekends, not only office hours.

  An out of hours contact number for the carer and information on what to do in an emergency is vital.

  Caring for the carer