End of Life Care: A Helpful Guide (2018)

Being diagnosed with a terminal condition is an emotional time and many people aren’t sure what end of life care offers.

Not only are you dealing with the impact of the illness and its symptoms, but you also have to proactively manage your support and determine what options are available.

The choices you make are affected by both your condition and where you live, as health and social care services aren’t distributed uniformly through the UK.

Although this is a complex topic, we hope to answer some of your questions.

End of life care is the support provided to someone in the last months or years of their life.

Although the exact timeframe and progression of illnesses can often be unpredictable, end of life care commonly refers to the support received during the final 12 months of life.

This is an extremely common question, as both interventions are similar, with significant overlap.

Palliative care encompasses end of life care, but incorporates additional tools into the management of incurable or irreversible conditions.

As such palliative care helps to manage the progressive symptoms of the disease and is designed to provide an individual with an optimum quality of life for as long as possible. Holistic management is key and can include psychological, social and spiritual support.

Palliative care is not just for the end of life and can begin earlier after diagnosis, working alongside other therapies.

End of life care is that portion of palliative care which usually begins when someone enters the last year of life.

It can encompass many of the aspects of palliative care, with an extra focus on helping individuals plan their final moments, make important decisions about emergency care, assist with legal matters and most importantly, allow a person to die with dignity.

A significant part of end of life care involves planning and discovering an individual’s preferences, to ensure their final choices are respected.

End of life care aims to accommodate an individual’s personal wishes at a difficult time. Therefore it’s offered in a range of settings, including hospitals, hospices, care homes and for those that wish to remain in familiar surroundings, their own homes.

The first point of contact will always be your GP, who should be able to arrange all the services you require or put you in contact with the relevant professionals.

Alternatively, click here to discover the NHS services local to you.

An advance statement (Scotland – Anticipatory Care Planning) covers what you want to happen in the final stages of your care.

With emotions commonly dictating decision making in difficult moments, many people opt to create a pre-emptive plan for to guide them and the action of health and social care staff.

It’s sensible to create this plan in conjunction with friends and family and put this plan in writing to clarify your decisions for the benefit of those delivering care.

Your plan can be reviewed regularly as your needs or wishes change and can include the following:

• Where you want to be looked after
• Your preferences on particular treatments or types of care
• Any religious or spiritual beliefs to be considered
• Where you want to be and who you want to be with at the end of life
• Who should be consulted if you become unable to make your own decisions (this is not the same as a Lasting Power of Attorney, which is covered below)
• Who should take care of practical matters, like caring for pets, should you lose the capacity to do so

It’s worth noting that unlike an advance decision to refuse treatment document, your advance statement is not legally binding, although your wishes will be adhered to wherever possible. You should keep this statement in a safe place, and one can even be placed in your medical file.

This is a written document that will only be used if you become unable to make decisions for yourself.

It’s legally binding and allows you to state which treatments you refuse and if there are particular situations in which those decisions will apply. For example, you may accept some treatments earlier in your end of life care, but refuse those same treatments if you have only have a very short time to live.

Additionally, you’re entitled to refuse life-sustaining treatment, such as being placed on a ventilator to help you breathe. You must specify your wishes in a written document, including the declaration “even if life is at risk as a result”, which must be signed by you and a witness.

Because of the varying needs of each individual, it’s advisable to speak to the health professionals involved in your case to gain insight into potential medical scenarios and your options.

DNACPR may form an important part of your advance decision to refuse treatment.

Doctors might have to make difficult decisions based on their judgement of your best interest if you’re unable to decide yourself, and this contingency hasn’t been considered.

For example, a doctor may decide not to resuscitate an individual if they feel it’s not in their best interest, such as when they’re in the final stages of life, and in doing so, that individual would be denied a peaceful, dignified death.

If you’re unable to make decisions regarding your care as your condition progresses, someone will need to make decisions on your behalf.

As part of your advance care planning, you can nominate someone close to you that medical professionals can consult, but in order for the role to be legally binding, you’ll have to make a Lasting Power of Attorney.

This allows the chosen person to make decisions about your care and welfare. You can also appoint an attorney to decide on financial and property concerns.

Click here for more information or call the Office of the Public Guardian on 0300 456 0300 for further guidance.

Click here for videos and written interviews by those who are planning for the end of life.

In addition to medical decisions at the end of life, you might also wish to get your financial affairs in order.

You can visit the Gov.UK website to learn more about this.

Hopefully, this article has been a useful introduction to this complex topic. For additional information, consult the NHS website and for more personal advice pertaining to your situation, speak with your GP, community nurse or social worker.

Author: Joel Key

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