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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
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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 Akkoc

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 Wong

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 Akkoc

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 Cosgrave

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 Bryant

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 Bryant

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 Meinel

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 Takayesu

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.

Photo of Chiara Pineschi

Thanks for sharing this. My grandad was lucky to die at home as well. Unfortunately, he was unconscious, for he long had Alzheimer's, so we could not get the loving affection you shared with yours. However, I agree as well that hospitals are no place to die. They numb emotions in a way, and surely the person who passes does not feel the same easiness as if she/he was home. Moreover, hospitals are disease-centred (as BJ Miller says in this TED Talk and not human-centred, as the family instead it. There is a strong need for an infrastructure which allows both focuses.

Photo of Morgan Meinel


Thank you for sharing this inspiring and lovely story of your grandfather. I especially love the part where he told you and your family that his proudest accomplishment was the people in the room. How special.

There have been many important questions raised in this conversation thread that your story has inspired. 
Just a few things that came to mind from a hospice/palliative care nursing perspective.

Firstly, I think it is very possible for the healthcare industry to help patients and their families create a more "homey" and comfortable environment within a hospital setting. On our Palliative Care Unit, we often encourage patients and families to bring in photographs to decorate the walls with, home made meals, artwork, and such. We also extend the invitation for people to bring their pets in to visit! Whatever enhances that persons quality of life, we encourage! The truth remains that nearly 63% of Americans die in the hospital, and although this may not be ideal, this is the reality of our current situation. Healthcare workers have a responsibility to engage and collaborate with the patient and their family and come up with a plan that optimizes that persons wellbeing.

I strongly encourage any person who has a loved one within a hospital setting, and who is critically ill or dying, to consult a palliative care team as quickly as possible. This teams will work with the patient and family and support them in having these difficult and meaningful conversations and honor the wishes of that person. 

Photo of Gavin Cosgrave

Thanks for sharing, your experience is super valuable for this topic! I think I shared this story hoping to offer an example of "death done well" if you will. I'm definitely excited to learn more about the problem and how to scale up bright spots of success! Palliative care looks like an amazing solution.

Photo of Morgan Meinel

Thank you for your contribution, Gavin, and for your thoughtful response! I'm a big advocate of palliative care as a means for which patients and their families have an extra layer of support to honor their wishes. 

Photo of Michael Fratkin

It's so important that families learn (again) to gather and suspend the "normal" flow of modern living to the greatest possible extent. Our natural state as a species...and not so in modern culture and society... has no illusion about the normality of mortality. By suspending the flow of our constructed obsessions and arbitrarily created norms in order to live and die in each others presence as families, healing and wellness arise. It is critically helpful to "shut up" in order to notice. I find this difficult, don't you?

Photo of Gavin Cosgrave

I totally agree, thanks for sharing! If a family (immediate or extended) spends years cruising on autopilot in separated worlds, I can see how the end of life experience would be less meaningful. I think it is interesting to consider that often, if a family does prioritize wellness and time together, the family can grow stronger even without the one member. Experiencing a death is difficult for sure, but it can help us remember that life is short and remind us to consider our priorities. 

Photo of Shane Zhao

Thanks for sharing this story with us Gavin:) It's a beautiful moment when your grandfather looked around the room and said that his proudest accomplishment was the people in the room. I think that's a moment many families would wish to have with their loved ones — at home. You highlighted something that we'll be exploring more as this challenge progresses — the role of hospitals and homes during the end of life experience and why do they have to be separate. E.g. being able to share a family meal with your loved ones can go a long way. Always great to have your insights on OpenIDEO!

Photo of Rochelle

Beautiful story!  thanks for sharing

Photo of OpenIDEO

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