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Caring for the terminally ill

The use of nursing and carer services to provide dignity and support of the terminally ill in their last phase of life

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

Hospitals have over time been designed to deliver efficient health services. They struggle to deal with physical and emotional needs of the terminally ill. In the last phase of their lives, terminally ill patients deserve to be cared for in their homes, a place which provides peace and tranquility rather than an environment focused on processing patients. Offering a mobile health service dedicated to the terminally ill would support their transition from life to death in a respectful way.

The shift away from hosting the terminally ill in their homes to hospitals is due to a variety of factors such as ongoing requirement for care that exceeds the needs of the carers and the lack of suitability of the facility. This places pressure on hospitals to host and service these people.

Sadly, if given the option, most terminally ill patients would prefer the comfort of a house over a hospital.

To address this issue,  providing a mobile nursing and mobile carer service to the terminally ill which allowed them to receive daily visits from a nurse who would deliver any pain medications and a carer who would ensure that the patient was kept clean and was fed as required. 

This approach would free up the amount of beds available for other patients and would leverage support services that already exist. Community based groups could also be engaged to complement/supplement the carers. 

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

Any terminally ill patients who have decided to remain at home could participate in a trial. The trial would validate time, effort, skills and cost requirements. It is anticipated that over a period of time, a catalog of services could be created which would streamline the services require per illness type which would drive further efficiency.

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

The community could validate the concept with feedback about its suitability. Would the terminally ill benefit from an environment that they are at peace in or would they prefer to be located in a busy, noisy and emotionally cold hospital environment? Would hospitals benefit from release beds and other resources from resources who can no longer recover from their illness? Would small private healthcare providers benefit from delivering support services at an individuals place of residence?

Tell us about your work experience:

I have seen family members and friends pass away in hospitals and in their homes. There is a significant difference in the quality of life just before a persons death for those who were in their homes.

This idea emerged from

  • An Individual

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Photo of Ilija
Team

Karina, the information you provided is very interesting. The article regarding mobile services currently being delivered in India is very relevant. It would be interesting to see how such an approach (village/community driven) would operate in western society. I will investigate this further. You have certainly expanded my understanding of what is occurring around the globe regarding palliative care. Thank you so much.  

Photo of Aaron Wong
Team

Hi Ilija,
This could be a great idea! I want to connect you with Karina Schoultz who wrote Reimagining the nursing home--where 40% of deaths in the United States are predicted to occur by 2020  who has a similar idea. This could make for a really incredible revolution in controlling exactly HOW and WHERE we die. I think Helen Da Silva  also wrote an inspiring post about checking in to somewhere you can be served, catered, and helped while passing - not unlike a hotel: The Death Oasis .

Photo of Ilija
Team

Hi Aaron. Thanks for your comments. I appreciate you making some recommendations regarding the concept. I will investigate this further. 

Photo of Aaron Wong
Team

No problem! Have you thought of prototyping the service out yet? What would the trial look like and what steps would have to be taken during the trial? How can your personal insights behind dying at home vs the hospital help you refine the mobile service? Personally, I immediately thought of rapid test mobile HIV units, and I think there are some similarities between the two.

Photo of Karina Schoultz
Team

I appreciate how your post addresses the all-important issue of getting care at home, Ilija (and Aaron Wong  , I appreciate your connection-making!). To some degree, your wonderful idea for a mobile team is up and running in Kerala, India through an amazing organization called Pallium India (http://opinionator.blogs.nytimes.com/2016/01/12/in-india-travelling-dispensers-of-balm-at-deaths-door/?_r=0). Healthcare teams of doctors, nurses and social workers go out together in vans to visit homebound patients. Their work is supported by a robust network of neighborhood volunteers, who check in on the patients in between these clinical visits. This support is crucial, I believe, as most individuals who are dying (or who are very medically fragile and could cross the terminally-ill line at any second) need care (monitoring for comfort, giving as-needed medications, providing incontinence care, preventing falls, for examples) throughout the day and sometimes night. For this kind of community-based caregiving, I wonder if we could look to the Village movement (http://tedxboston.org/speaker/willett) or Frantisek Rokusek 's idea for FLAT&CARE [Share a flat, Share the care] : reduce costs by Accommodation Sharing .

Photo of Frantisek Rokusek
Team

Oh yes that is amazing!
Thank you for your feedback Karina :)

Photo of OpenIDEO
Team

Hi Ilija, interesting post! Any chance you could find an image to go along with it? Images help grab attention and tell a story. You should be able to use the Edit Contribution button on the top of your post and follow the instructions to add images from there. Looking forward to seeing more of your inspiring insights on OpenIDEO.