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Who's In Charge?

End of life care decisions are often left in the hands of next of kin, who are not always best placed to make informed decisions.

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Who is your idea designed for and how does it reimagine the end-of-life experience?

Terminal or dying patients need an advocate who is knowledgeable, informed and only concerned about the patient.

My idea is that each and every dying patient be allocated a coach. Like a child advocate in cases where parents can't decide care arrangements, where the child's needs are overlooked, someone is appointed to make decisions based on the needs and wishes of the child. In the same way, our dying loved ones too often fall through the gaps. Sometimes there is a good GP to do the job. Sometimes, a good nurse in a hospice will pick up the reins or perhaps a specialist. But sometimes no one knows who the prime care decider is, and the patient falls through the gaps because everyone thinks "someone" is in charge.

Too often, the decisions fall on the dying. Mostly, the dying don't WANT to die at all and are too busy trying to stay alive. And then the next in line come wives, husbands, children - and all of them are in emotional distress. Again, each one thinking "someone" is in charge.

So, you see, dying requires a care leader. If "personality disordered someone X" doesn't want a nurse in the home and the patient wants to die at home, too bad for  person X. The care leader decides. Death can come quickly at the end and a dying person's needs are overwhelming and must come first.  A coach can cut through the confusion and keep everything on track. If spiritual care is required, the coach can bring someone in. If there is a certain painful condition, such as bed sores in difficult places (which can be excruciating), the coach will alert a doctor and well meaning family who use donuts or bandages that make things worse, are shown a better way.  A daily visit by a nurse to bathe the patient is not enough. There is too much going on.

No one knows when a person will die but there are symptoms, which, from about 6 weeks before death,  show that death is within weeks. At that stage, a death coach should be appointed to plan care. All appropriate care arrangements should be put in place and overseen by this person. Once the plan is in place, the coach takes over.

If care is being well planned and executed, then all the family needs to do is love. Their job is not to focus on meds or changing dirty sheets or fill in forms or worry about how much pain their loved one is in today. 

This idea also overcomes any chance of abuse, which, sadly happens when people are weak. 

What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

I would like to try the idea with just one doctor to start with. A suitable case could involve a terminally ill person with no family or in a difficult family position.

What skills, input or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

I would like some legal guidance about how much power a care director would have.

Tell us about your work experience:

I am an entrepreneur with vast commercial experience and a degree in economics.

This idea emerged from

  • An Individual

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