End of life

While it is never pleasant to think about, good planning can help to reduce the stress and anxiety surrounding end of life decisions. Everyone has their own wishes for this difficult time and these are more likely to be realised if a written plan is prepared in advance and discussed frankly with loved ones and clinicians. It can take some of the pressure off loved ones and give you peace of mind to better enjoy the time you have left.

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The Hippocratic Post have written a useful article on when we need to think about planning, and how to plan, end of life care. It is an article aimed at everyone rather than just those with chronic illnesses, but most of the points it makes are very relevant to people with chronic illnesses.

Visit the Dying Matters website for more information, including the Find Me Help directory to locate services in your area and national helplines

NICE Guidelines: In the UK, the National Institute for Health and Care Excellence (NICE) have produced a quality standard covering the care to which adults are entitled when they are approaching the end of their life. This includes useful links to a number of supporting organisations, including The Patients Association. The guidelines can be found here: NICE End of Life Care for Adults

Anticipatory care planning
It may be difficult to express your wishes if you become worse suddenly, especially if you become breathless or confused. People with some forms of aspergillosis may deteriorate more quickly or slowly than expected, so it is generally recommended to have a plan in place if there is a chance that that you might die within the next 6-12 months.

You might include the following in your plan:

  •  Whether you would like a DNACPR (Do Not Attempt CardioPulmonary Resuscitation) note or Advance Decision added to your medical records
  •  Whether you would prefer to be at home or in a hospice at the end
  •  What kind of pain relief you prefer
  •  Whether you would like a chaplain or other religious official to attend
  •  What kind of funeral you would like
  •  What to do with any medications in your ‘just in case’ box
  •  Who will have power of attorney

You may want to write an updated version of your plan if your symptoms, concerns or wishes change in the future. you have the right to change your mind.

Arranging palliative care
Your GP or care team will be able to give you the contact details for the palliative care services in your area.
Call 020 7688 5555 or email enquiries@blf.org.uk to find out whether a British Lung Foundation nurse could help you receive treatment in your own home, rather than in a hospital.

Emotional support

Find one-to-one or couples counselling services in your area using the Counselling Directory. Or contact Soul Midwives or Compassion in Dying.

Arranging for a pet to be looked after

The Cinnamon Trust helps to keep pets with their owners for as long as possible. They can walk dogs for those who lose their mobility, or foster pets while their owner is in hospital, or arrange a new home for pets whose owners die or need to move into a hospice. Arrangements are made in advance, and emergency cards are provided.

Other schemes include Cat Guardians (Cats Protection) or Canine Care Card (Dogs Trust).