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Dignity in dying and care for the living

Campaigner Amanda Waring explains why approaches to dignity in dying need to change in the UK, and offers some tips for caring for the living.

Renowned filmmaker, comedian and actress Amanda Waring is a staunch campaigner for dignity in dying, after experiencing what she describes as the horrendous end-of-life care received by her mother, actress Dame Dorothy Tutin, who lost her life to cancer.

Amanda is calling for a national change in attitude towards those in need. According to Waring, educating those already working in the sector is only one piece of the puzzle.

She explains: “As an ageing population, there is no escaping the fact that there will come a time when quality of care will be at the top of our personal agenda, whether it’s for a loved one or because we, ourselves, need support.

“We all have to be advocates for the frail and elderly. Dignity is such a fundamental right and delivering that dignity should not be seen as a challenge but an opportunity. I believe in encouraging a different approach, one that is more engaging, not only with health and social care workers and providers but with anyone who feels they would benefit from learning and understanding more.

“Appalling breaches of dignity do occur and need to be exposed. But at the same time there has to be a balance, those who are committed and diligent should be recognised for the excellent work that they do to encourage more of the same.”

Amanda is taking her message on the road. Her dignity tour is open to members of the public keen to share her insights and develop their skills in this area.

“We have to tackle this issue head on. Day-to-day pressures overwhelm so many of us that we can easily lose sight of what matters. My training sessions are geared towards helping people to reconnect with the fundamental principles of dignity and care, and to reminding them why these principles matter.”

Tips for caring for loved ones with dignity

These tips are from Amanda’s book “The Heart of Care: Dignity in Action: a Guide to Person-Centred Compassionate Elder Care”, published in 2012.

Remember to look after yourself, focusing on self-care, self-love and self-responsibility, to prevent yourself from feeling overwhelmed. Do not be afraid to ask for help through friends or organisations when you are struggling.

Ask yourself: How do I see my role as a carer? Am I someone who does something for someone or with them, offering the right amount of support and encouragement?

Allow older people to restore hope and belief in their own abilities by encouraging them to take small steps through increasing their participation in activities. Enable a sense of purpose and contribution.

If you take over the tasks of an older person without asking their permission or giving them confidence to try for themselves you can erode their self-belief to such an extent that they start to shrivel to fit the box you may have unknowingly put them in.

Use a larger plate so that the amount of food you are trying to encourage the person you are caring for to eat doesn’t seem overwhelming. There is a lot of great specialist equipment to help an older person feed him or herself for longer, such as cups with lip-guards and non-slip placemats.

Recognise the damaging effects that physical inactivity can have on the body and try to help them keep as active as possible. Consider using the grandchildren to perhaps play some of the physical computer games with them on the Wii or Play Station if getting outside is a challenge.

Find other ways to connect with your loved ones. Don’t underestimate the power of touch and the power of the senses. Use music to lift, pillow sprays of favourite fragrances, a pet to be stroked and joyful photos to allow memories to act as medicine.

Restore someone’s sense of control by maximising their involvement in decision making and including them in conversations about their well-being.

Tips for caring for someone with dementia

Don’t argue with facts but validate the person’s feelings.

Allow their feelings to be expressed.

Never forget that all behaviour has meaning for the individual. It is therefore more important to have an understanding of what the person is trying to communicate rather than to simply resort to making decisions on their behalf.

Use a running commentary approach when talking with a person with dementia by saying what is about to happen or what has just happened.

Activities must be set in the here and now rather than the future.

How do I spot a good care home?

Trust your instinct. What is the atmosphere like, is there a welcoming ambience?

Are there clear lines of communication among residents, staff, managers and relatives?

Are residents kept fully informed of events affecting their well-being?

Is there an effective complaints procedure in place for the residents?

As a relative, do you feel the care home would welcome your involvement in the community life?

Some questions residents themselves may wish to ask

How person-centred is the home? Does it treat residents as individuals or according to symptoms/age?

How friendly are the staff?

How happy do the other residents seem?

Will I have opportunities to occupy my time meaningfully?

Will my relatives be welcome?

Will I have access to the outdoors?

Am I able to influence my food and drink choices?

How will my spiritual and emotional needs be met?

Will I be listened to when voicing any concerns?

About Amanda

Amanda’s work is recommended by the British Journal of Nursing and the Royal College of Nursing and she sits on many advisory boards, including the Governments Dignity Board for which she instigated the dignity in care campaign which now has over 50,000 dignity champions. She regularly supports projects and is Patron of the Lewis Manning Hospice, Action on Elder Abuse Lancing and Symposium. Amanda is a regular media contributor speaking on TV and radio about her campaigning for dignity and improved care for all. Recent TV/radio interviews include Sky News, BBC Radio 4’s Women’s Hour and Start the Week, BBC Breakfast and BBC Radio 5 Live.

Amanda’s films and books can be purchased at www.amandawaring.com

This article was published in March 2016.

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