Dignity in death and the importance of end of life care

Health ombudsman Julie Mellor.
Health ombudsman Julie Mellor.
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A new report says that thousands of people are being given poor end of life care. Chris Bond examines the impact of this and asks if there is such a thing as a good death?

LITTLE IN life is guaranteed but death is one of the few unavoidable certainties that we must all face at some point.

But the question of how, and where, we die is a different matter – one that’s become increasingly contentious as people seek to have a greater say on how they leave this world. We have choices in life, so why can’t we decide the manner of our death?

It’s a question that goes to the heart of a new study into end of life care, commissioned by the Parliamentary and Health Service Ombudsman.

Its Dying Without Dignity report found too many instances of poor communication leading to families losing the chance to say goodbye to their loved ones, along with poor pain management and inadequate out-of-hours services.

Every year, around half a million people die in England and in the majority of cases death isn’t sudden.

The report says that many of these people would benefit from end of life, or palliative care, which could help improve the last few months of their lives.

The ombudsman, which makes final decisions on complaints about the NHS in England, looked at investigations it had completed from GP practices to hospitals and mental health trusts, to identify the issues it sees the most often. Some of the stories highlighted in the subsequent report make for harrowing reading, including “tragic” cases where suffering could have been avoided or lessened with the right care and treatment as people approached the end of their lives.

The report said a 74-year-old cancer patient, referred to as Mr C, “suffered unnecessarily at the end of his life” as staff “failed to provide treatment to ease (his) discomfort in his final hours”.

It was clear from his medical records that the hospital knew he did not have long to live, but despite this, staff did not recognise that a drip was no longer an appropriate treatment option for someone so close to death.

He was subjected to 14 unnecessary attempts to reinsert the drip, which would have caused him further pain and discomfort in his final hours.

The report also features the story of a mother who was forced to call an A&E doctor from another hospital ward as a last resort to get her 29-year-old son pain relief.

The family knew nothing more could be done to treat his cancer, and the investigation found he experienced unnecessary pain and distress for more than 11 hours while in a palliative care unit because the on-call doctors did not respond to a request to review his pain medication.

In another case the family of a 67-year-old man learnt of his terminal cancer diagnosis through a hospital note – and before he knew himself.

This, the report said, “failed every principle of established good practice in breaking bad news.”

Ombudsman Julie Mellor believes the NHS should use the report to help prevent similar cases from happening again. “Our casework shows that too many people are dying without dignity,” she says.

“This report highlights the impact on patients and their loved ones, when the care and treatment of people nearing the end of their lives, falls short.

“Our investigations have found that patients have spent their last days in unnecessary pain, people have wrongly been denied their wish to die at home and that poor communication between NHS staff and families has meant that people were unable to say goodbye to their loved ones.”

One of the issues highlighted by the report is the need to ensure enough staff are available, either in hospital or in the community, to properly listen to the needs and concerns of dying people and their loved ones.

It’s something that Bill Noble, medical director at Marie Curie, agrees with. He points out that while hospitals offer palliative care it’s not necessarily available round the clock.

“Only 20 per cent of hospitals have palliative care teams available across the weekend and a smaller proportion have teams available for face-to-face consultations 24 hours a day,” he says.

He points out that end of life care in the UK actually compares favourably with elsewhere in the world, but agrees that improvements could and should be made.

“We need to be better at identifying those people that have terminal illnesses so that we can help people to start planning for the worst.”

Prof Noble says doctors and nurses need to be better at communicating with patients and families so that they’re aware of the options available to them.

“Around half of people in this country die in hospital and a good proportion of them would like to die in their own home.”

Hospices alone can’t deal with such numbers so there needs to be a better system in place if we’re to avoid a repeat of some of the harrowing stories mentioned in the health ombudsman’s report.

But what about our own attitudes towards death? You only have to go back a handful of decades to find a time when death was a much more familiar facet of people’s lives.

It can be argued, too, that in the past we had a healthier relationship with death, whereas today it’s become something of a taboo subject.

“The perception of medicine now is that it’s all-powerful and people have much greater expectations and this makes it hard for them to accept and to be told sometimes that nothing more can be done,” says Prof Noble.

But whatever our attitudes may be towards death, health experts agree that we need to be striving to improve the level of care given to those in the final stages of a terminal illness.

Tony Collins, chief executive 
of Saint Michael’s Hospice, in Harrogate, says health care strategies, rightly or wrongly, are worked out on a local basis which means there isn’t always a consistent service across the country.

He would like to see more training and investment in palliative care 
as well as closer ties between health care and social care, and between health professionals and the voluntary sector.

“If that means consultants and nurses from hospices going into hospitals and GP surgeries and saying ‘this is how it can be done better’ then that should be happening.”

But he believes attitudes towards the whole issue in this country are starting to change. “It’s begun to move up the agenda and we’re starting to see conversations take place.

“We’ve heard what a bad death looks like and now we need to understand what a good death looks like,” he says.

“As well as more training, more investment and more collaboration, we need people talking to their loved ones about what they want from their care.

“We need more people writing wills and more people signing up for organ donation. All this can contribute to a good death and that process is starting.”