OpenIDEO is an open innovation platform. Join our global community to solve big challenges for social good. Sign up, Login or Learn more

Family and Home Can Make Death a Bonding Experience

When a patient and their family can plan to spend last moments together, death can be a smooth and relaxing process.

Photo of Gavin Cosgrave
17 21

Written by

One year ago, my grandfather, who we affectionately called "Papa", passed away. After spending years on oxygen and weeks uncomfortably in a hospital bed, he returned home to live his final weeks.

My whole family visited the next weekend, and we shared several meals together. We shared stories about his humor, humility and heart for his family. 

When he was in his late twenties in the 1950's, Papa had been an accountant in the blossoming Silicon Valley. Despite the incredible opportunities and salaries, he was working long hours, and was unable to spend much time with his expanding family. 

Papa decided to move my whole family to a small town in the Central Valley in California to live on the farmland his parents had lived on. Papa put family first, and inspired our family to do the same. 

After we finished sharing, Papa told us that his proudest accomplishment was the people in the room. 

Two days later, Papa died peacefully with his pastor and daughter by his side.

While his end-of-life experience was smooth and meaningful, deaths often rattle families. 

For me, this raises the questions about the role of hospitals in the end of life experience. 

How can hospitals more closely resemble homes? Food and family were two keys to Papa's experience... how can hospitals inspire meaningful conversations at the end of life?

What is a provocation or insight that might inspire others during this challenge?

Is a longer life always better? How can we design the end of life to be a peak moment that brings a family closer together?


Join the conversation:

Photo of Mustafa

People die in hospital and they get medics until the  last moment , because hospital responsibility is to keep the person alive , the doctors believe medications will increase the life time maybe , but the patients spends their last weeks or last month or last day in hospital for what reason , nobody knows , this industry actually never thinks about human much , they think about how much money they can get more from the patient , we need to answer this question clearly what is the difference between dying today or tomorrow if you are very sick , the difference if you leave  the hospital today and enjoy with your family until tomorrow that's nice , if you stay in the hospital you will not enjoy anything because the medics keeps you sleep all the time you will spend more money to hospital each they you stay in hospital , that is the difference. 

Photo of Aaron

Mustafa Akkoc , that is quite a stark comparison. I think money is a major issue that arises when it comes to death, yet we don't talk about it very much.  It's important to think about how money (financial hardships, wills, etc) affects families and their decisions as well as how the medical profession prioritizes money. Who really makes the decisions? The patient, the family, or the hospital?

Photo of Mustafa

yes we need to identify who really makes the decisions , if really create good solution for end of life , new idea , and the decision maker is not satisfied , the end of life idea we built will not be functional , because the decision maker will reject it , move forward. the functionality of the the idea is under control of decision maker. This decision maker can be patient , family and hospital. As you said these are the main decision makers. We need get deep into functional responsibilities , for example the functional responsibility for hospital is clear for end of life experience ,they just want to keep the person alive until last moment

Photo of Gavin

Great discussion!
Discussing money and planning for death can be a taboo/difficult discussion, especially with a healthy person, but that doesn't mean there aren't important decisions around money to make. How can hospitals and families work together to plan for the end of life?

Photo of Hattie

Families have to take the lead.  Families have to demand truth which is very hard to come by because most physicians will not voluntarily tell us what they know.  They don't want to be the one who says, "We've lost your father."  There are surgeons who will not let someone die on their table. Physicians are trained to save us, to keep us alive, not to let us go gently.  At the same time, many adult children demand, "You have to keep my mother alive."  There is so much denial and family system dysfunction going on it is nearly impossible to sort it all out at the very end.  We all need to plan ahead and provide clear instructions to family and friends.  The hospitals are not going to to the lead, we consumers must.

Photo of Hattie

By law, default care is "do everything" to keep a person alive.  Before 1990 and the passing of the Patient Self-Determination Act, family doctors guided families as a very sick or frail person came close to death. Those family doctors made decisions that allowed a person to have a gentle death at home surrounded by friends and family.  After 1990 the law took the power for a doctor to do what he or she thought best and turned the power over to the ill patient.  

The law says that you are in charge of your health care and no one can do anything to you without your permission.  This is called, informed consent.  If you are too weak to hear the options and make your own choices then you need a proxy to speak for you.  If you have no proxy then by law the default proxy is usually your closest relative-depending upon the state you live in.  Now the proxy has to listen to the doctor and make a decision for you.  If you have not named a proxy and told that person how you want the end of your life to unfold, our healthcare system can and will just keep you alive.  Very, very sad state we are in now.  While we are healthy, we each must take personal responsibility to pick a proxy and tell them what we want.  The family as a group should not be burdened with this and the hospital, by law, cannot take the lead. And, as Mustafa said, the hospital makes money for every procedure so it has a conflict of interest, right?

Photo of Morgan

Mustafa Akkoc   and Hattie Bryant - thank you for these incredibly important insights! 

I believe that all of your mentioned points shed light on the extraordinary importance of making one's wishes known, especially when a person has their mental faculties intact and are in a relatively healthy state - in regards to medical care, end of life care, health care proxy, etc.. 

5 Wishes is a legal document and America’s most popular living will because it’s written in everyday language and helps people express their wishes in areas that matter most — the personal and spiritual in addition to the medical and legal. Here's the link:

Great and informative article on "Death over Dinner Conversations"  - creating a supportive environment to discuss these difficult topics in a safe setting. Some good ideas here!

Photo of James

Having expressed wishes well in advance of death is essential to engaging with healthcare at the end of life.  No matter how sick patients are, families are often caught out by the relative suddenness of an acute decline and seek medical evaluation in the ER to be sure there is nothing treatable or reversible.  While many conditions are treatable, the treatment comes with an assuredly poor outcome or prolonged, medicalized death.  Medical providers may fear being paternalistic by making the determination of futility and offer a "wait and see" approach that can tempt families to open the door to treatment.   Unfortunately, this dance of decision-making often leads to a mode of death that no one wanted.  Families, as well as providers, must recognize and respect expressed patient wishes and this is a discussion that takes time, effort, and courage to create, digest, accept, and adhere to when the acute decline happens.

View all comments