Advance care planning

Advance care planning

If you are terminally ill, drawing up an advance care plan may help you to have a good death. Putting on record how you would like to be treated in your final days and months can give you and your loved ones reassurance and hope.

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Advance care planning

Given the choice, most people say they want to die at home rather than in hospital. Their preference is usually for a gentle death, surrounded by family, with the minimum of medical intervention. If religious, they will want to be visited by a priest or minister. Agreeing these preferences is known as advance care planning.

When you are seriously ill, you can tell your carers and your family how you would like to be looked after when you are dying. You may want to set this down in writing in case there comes a time when you are no longer able to communicate your wishes.

What goes into an advance care plan?

Stating preferences about your care is part of what is known as advance care planning. This is a written record of how you would like to be treated when you are dying.

Advance care plans can help the people looking after you to make informed decisions, and ensure that people close to you are involved and informed about your care.

A plan will usually cover health care and you may want to state where you would like to be cared for, for example at home, at a hospice or in a hospital. You may want to include what food you are given or how you are dressed.

Regularly review your advance care plan

You can make changes to your plan at any time and you will usually be encouraged to review it regularly and to share updated versions with your carers and loved ones.

David Albert Jones, Director of the Anscombe Bioethics Centre, says: “An advance care plan can help ensure that your needs are not neglected, for example that people assess your need for food and drink.  This should happen in any case, but writing it down is an added safeguard.

“In a similar way a written statement can prevent you getting excessive and unnecessary treatment. For example, excessive sedation or attempts at cure that have a heavy burden but little prospect of success.”

Refusing ‘over-zealous’ treatment

A major study recently conducted in 10 countries1, including England, found that many dying patients are subjected to invasive treatment that is of no benefit to them. Some were treated with antibiotics, blood transfusions and other life support.

This research and other studies have concluded that doctors come under huge pressure from families to do all they can to keep patients alive. Doctors may themselves see discontinuing active treatment as “an admission of failure”.

What does the Catholic Church teach?

The Catholic Church teaches that patients should not be subjected to unwanted and unnecessary treatment.

It states: “Though people have a duty to care for their health, they do not have a duty to prolong their life endlessly. Death, after all is inevitable. So also, healthcare workers do not have a duty to keep people alive in all circumstances.

“As death approaches, a treatment which may briefly prolong life could impose suffering, such that the patient considers the treatment to be excessively burdensome.”2

For instance, Cardinal Basil Hume (1923-1999), Archbishop of Westminster, declined chemotherapy when he was diagnosed with terminal cancer in 1999.

Advance decisions

It is possible to give legal force to your future wishes.3

One way is to make an advance refusal of treatment. Your doctors are legally obliged to respect these refusals. Another possibility is to grant someone a Lasting Power of Attorney for Health and Welfare to make decisions on your behalf if you are unable to communicate when the time comes. Your doctors are legally obliged to consult this person.

Making your views clear

David Albert Jones warns that there are dangers in making a legally binding advance decision: “If you make an advance decision to refuse treatment based on good reasons then it is morally acceptable, and in line with Catholic teaching, to do so.

“However, it is generally unwise to make a legally binding advance decision, because it may prevent a doctor giving you treatment that would be beneficial.  For this reason it is better to make your views clear in an advance care plan but not make a formal advance refusal of treatment. For a similar reason, if you decide to appoint an attorney it is wise not to give them the power to refuse life-sustaining treatments on your behalf.”

Planning your spiritual care

The medical profession talks about “end of life care” but Christians believe death is the gateway to a new life with God.

If you are a Christian, you will want to let your carers know about your spiritual needs and you may include these in your advance care plan. You may, for instance, want to mention religious objects you would like to have next to you such as a favourite icon, crucifix and rosary.

Anointing of the sick

If you are a Catholic, you will want to receive visits from a priest who will celebrate with you rituals known as Sacraments to give you strength and inner peace.

One of these is the Anointing of the Sick which is given to people who are seriously ill.

The Gospel has this to say about the sacrament: “Are any among you sick? They should call for the elders of the church and have them pray over them, anointing them with oil in the name of the Lord.

“The prayer of faith will save the sick, and the Lord will raise them up; and anyone who has committed sins will be forgiven. Therefore confess your sins to one another, and pray for one another, so that you may be healed. The prayer of the righteous is powerful and effective.” (James 5:14-16).

Read more about the support of the Church.

Many people have found inspiration in the hymn, Lead Kindly Light. In 1909 in Durham, a group of survivors of England’s biggest mining disaster sang the hymn as they awaited rescue deep underground.

The hymn was originally a poem written by Blessed John Henry Newman (1801-1890) after he recovered from a serious illness in Sicily. Its main theme is one of trust in God’s light shining the way forward for us on life’s journey: “I do not ask to see/The distant scene; one step enough for me.”

Footnotes

  1. Research by University of New South Wales, June 2016.
  2. From A Practical Guide to the Spiritual Care of the Dying Person, published in 2010 by the Bishops’ Conference for England Wales. Page 24.
  3. See The Mental Capacity Act and ‘Living Wills’: a practical guide for Catholics, commissioned by the Catholic Bishops’ Conference of England and Wales.