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Supporting loved ones through end of life care

01 May 2013 by Andrea Sutcliffe

Andrea Sutcliffe, Chief Executive of the Social Care Institute for Excellence

My Gran died at home at the age of 93. Her last few days were sad and difficult for everyone in the family, but we know that she died peacefully where she wanted to be. While formal services played their part (health, housing and social care) what really made the difference was the dedicated, day-in, day-out care and support from my aunt and uncle who lived close by.

My Gran died at home at the age of 93. Her last few days were sad and difficult for everyone in the family, but we know that she died peacefully where she wanted to be. While formal services played their part (health, housing and social care) what really made the difference was the dedicated, day-in, day-out care and support from my aunt and uncle who lived close by.

Everyone is likely to be affected by End of Life Care but a recent report from Marie Curie highlighted that 71% say people don’t talk about death or dying enough and 50% would not know where to turn for practical support, if someone close to them were terminally ill. What the research from Marie Curie also shows is that 63% of people would like to die at home, but that often this does not happen.

We know how important it is for families and carers like my family to have sufficient information to make informed decisions about the care and support they need; and how to access it at such a difficult and distressing time. At the Social Care Institute for Excellence we are committed to helping people find the best care and support at a time when they may need it the most. But this takes planning, considering all the options and effective coordination.

Planning

Talking about dying can be very difficult, especially for relatives, but planning ahead is really helpful. It can help alleviate anxiety for the dying person and for their carer to try and bring their hopes, preferences and even fears out in the open. Many people would prefer to die in their own home; others will find the support of a hospice preferable. Whatever the choices made, health and social care professionals will try and help to make sure the right support will be available, and that it will not be too burdensome for their family or carers.

All of the following are essential; planning for funerals; making sure wills are up to date; and settling any financial issues. Attending to these issues could mean that there will be fewer things to worry about later on.

To help people and their carers to plan ahead, we set up Find Me Good Care – a free online service that provides guidance on care and support options. It includes advice on what to look for, how to pay and what your rights are. We hope that this service is helping to alleviate some of the worry.

Options

The nature of End of Life Care means that even the best laid plans can sometimes go off track. Medical conditions may deteriorate rapidly, and so, a care plan that works one month, could be inappropriate the next. Carers and families need to have time for reflection and to remember that it is OK to change their mind at any stage of the care process.

Hospices are a good place to start when looking for extra support. Many hospices now offer day centre support, without the need for admission. They also provide respite care, the chance to stay for a few days to relieve exhausted carers, or to sort out a particular problem such as pain relief. Your relative may choose to spend their last days in a hospice. Carers may choose to continue to look after someone in their own home, but can be reassured that hospices can be on hand for advice, support, respite care and treatment, if they need it.

Co-ordination

Using different care services can be confusing. It is important that care is coordinated. The good news is that Electronic Palliative Care Coordination Systems are becoming increasingly common. These systems gather information on people close to the end of life, allowing information about the person to be available to out-of-hours services including GPs, palliative nurses, A&E and ambulance crews. It is important for care staff to have round-the-clock access to a person’s records and these systems can make that access much easier.

A good death

My Gran died where she wanted to be. I hope that by helping carers with information and support to put these steps in place, more and more people like my Gran will receive the care they need and wish for in their last days.

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