Ask the Experts

They don't mind me die

Q I am an 80-year-old hospital patient. Early in March I had an appointment and was asked to hold the folder containing my notes. In my folder I noticed a yellow sheet saying “Do not resuscitate,” in big black letters. No one had talked to me about this. I am now very unhappy and nervous. I have a lovely husband and a good life. I trust my faith as a Christian will see me through but I’m worried.
Name and address supplied

Agnes Fletcher says: This is an outrageous abuse of trust, which goes against the clearly-stated guidance of the British Medical Association and the Royal College of Nursing.

A “Do Not Resuscitate” (DNR) order on a patient’s file means that a doctor is not required to resuscitate a patient if the heart stops.

Used appropriately, DNRs prevent people suffering pointlessly from the effects that resuscitation can cause, such as broken ribs, other fractures, a ruptured spleen or brain damage.

The usual circumstances in which it is appropriate not to resuscitate are:

• when it will not restart the heart or breathing

• when there is no benefit to the patient

• when the benefits are outweighed by the burdens.

The last of these factors, in particular, can be highly subjective and this is where problems can arise. The medical profession is not famed for its understanding that a positive life can still be led with substantial impairments.

In spite of that, guidelines issued by the British Medical Association and the Royal College of Nursing say that DNRs should only be issued after discussion with patients or their family. Although it may be difficult to have such discussions with patients and their relatives about whether to revive someone or not, doctors accept that this is no reason why discussions should not take place.

In the UK, NHS Trusts must ensure that:

• an agreed resuscitation policy that respects patients’ rights is in place

• a non-executive director is identified to oversee implementation of policy

•  the policy is readily available to patients, families and carers

• the policy is audited and regularly monitored.

 The clear guidelines on DNRs had to be firmly restated in 2009 after a number of seemingly healthy patients discovered they had DNR orders written in their medical notes without consultation with them or their relatives.

You should tell as many people as possible about what you have discovered, and complain both to the manager of the ward that you are on and to the hospital trust through its usual complaints mechanisms.

You should state clearly that you do wish to be resuscitated, if that is your wish. Others in your position should do the same.

If you are in hospital and have any concerns about this issue, you should make your wish to be resuscitated clear and ask for it to be recorded in your medical files. Age UK is very concerned about this issue and may be able to offer further support.

What benefits can my hole-in-the-heart son get?

Q We are currently awaiting an appeal to see if our eight-month-old son qualifies for DLA personal care. Our son has a hole in his heart and has narrowing arteries. He is on propranolol three times a day to keep his heart steady and is waiting to see a surgeon about open-heart surgery, but could you tell us if we are entitled to anything else? My partner works full-time on a minimum wage. We get child tax credits, working tax credits and child benefit. Are we entitled to help with transport or anything else?

Cassie Symms, Sheffield

Ken Butler of Disability Alliance replies: I am very sorry to hear of your baby son’s serious ill health. One of my sons had an operation soon after birth due to a heart defect and I can appreciate the great worry and concern you and your partner must be experiencing.

Disability Living Allowance (DLA) is a non-means tested benefit that has two parts: a “mobility” component and a “care” component.

While there is no lower age limit for DLA, a mobility component to help with transport costs is not payable until a child is at least aged three years old.

There is an extra “disability test” for children. This establishes that a child has care or watching-over needs “substantially in excess” of usual children of their age. It can often be difficult to demonstrate this in the case of infants. It would therefore be very useful if your son’s medical team could set out for you the degree and level of such extra care and/or watching over that your son will need and for how long this might continue.

An extra “disabled child element” is payable within child tax credit if a child (or young person) receives either the mobility or care component at any rate (or if they are registered as blind). This is worth £2,800 per year for those entitled to maximum child tax credit.

If a child receives either the higher care component of DLA (due to both day and night time needs), then an additional “severely disabled child element” is payable within child tax credit. This is worth £1,300 per year for those entitled to maximum child tax credit.

In addition, if a child is awarded either the middle or higher rate of the DLA care component then you can claim carer’s allowance for looking after him or her. This is paid at £53.90 per week and is not means tested (although it is not possible to receive it if you have earnings of more than £100 per week).

You should seek help from a local advice centre to see if it might support your son’s DLA appeal and advise you if you might also be eligible for help with things like rent and council tax or NHS charges.

•A fact-sheet on finding a local advice centre is available: disabilityalliance.org/fact.htm