This week the care bill committee is debating who should be eligible for social care. MPs will also consider whether to add a clause that would enable exemption from social care charges for those at the end of their lives.

The amendment would also establish the need for better forward planning about where we would like to die. Most of us would prefer to be at home surrounded by the people we love, yet fewer than one in three are currently able to do so.

Why is it that 89% of those who die in hospital do so following an unplanned admission? In many cases it is because of the sheer exhaustion that comes with providing around-the-clock care. At the end of life there may be a period of days, but sometimes far longer, of complete dependency. Families go to enormous lengths to cope but, especially where there is only one person in a position to provide care, the elastic can only stretch so far.

All too often, an admission to hospital feels like an admission of defeat that can haunt bereavement with an unjustified sense of failure and regret. Those needing palliative care are being failed by poorly joined-up NHS and social care at the time when they need it the most.

Just 5% of those who care for someone with cancer at the end of life are identified as carers and, even where they are, will find that assets of just £23,250 (not including the value of their home) exclude the sufferer from entitlement to help with the cost of social care. These self-funders often struggle to find information about who is available to help or worry about how to find the money to pay for the cost of that support. Too often carers battle on alone, sometimes putting their own health at risk, until the situation completely falls apart.

Free social care can be provided for those who fit the exacting criteria for NHS continuing care, but 97% of healthcare professionals surveyed by Macmillan agreed that the complexity of social care needs assessments and the time needed to complete them were barriers preventing appropriate care. In reality, the bar is set too high to meet the needs of those nearing the end of life, let alone those caring for them. Many professionals and families describe continuing-care assessments as a nightmare.

Including a commitment to the principle of free social care at the end of life on the face of the care bill would drive change and enable many more people to experience a “good death” in the place of their choice. The proposed rise in the asset threshold to £123,000 will still leave many families stranded without a commitment to free end-of-life support.

It makes no sense to continue to admit people to hospital where a worse experience is also more expensive. Figures from the national end of life care programme show an estimated net saving of £958 per person who dies in the community rather than in hospital.

The problem is that social care and the NHS are funded from different budgets. There is no incentive for over-pressed local authorities to agree to fund social care at the end of life and every financial inducement for hospitals to admit. The £3.8bn Better Care Fund for integration of health and social care should help but has already been earmarked for a number of other vital projects.

There are other barriers to improving end-of-life care, somewhat arbitrarily defined as the final six months of life. Reliable and timely support from palliative care teams and community nurses also improve the chance of remaining at home and yet there remains unacceptable variation around the country.

It helps if doctors recognise their patient is dying and do not shy away from open and honest conversations about their wishes. A Dying Matters pilot study found that 67% of GPs rated themselves either “not confident” or “not very confident” in initiating conversations about end of life.

Failure to start those conversations results in poor planning with patients about where they would prefer to die.

The ability to share medical records also reduces avoidable admission to hospital. Where implemented, electronic palliative care co-ordination systems have helped as many as 80% of people registered to die where they wanted: another project earmarked for the Better Care Fund.

Anyone who has witnessed the lonely, impersonal deaths that can sadly happen on busy general hospital wards or in A&E departments will know why it is so important to enable genuine choice at the end of life. That will not be possible unless the government commits to allowing rapid access to free social care.

http://www.theguardian.com/commentisfree/2014/jan/15/dying-patients-free-social-care-end-of-life