Auntie K was having trouble breathing at home and her son called 911. She is now in the Intensive Care Unit. The doctor asks the family, “What would your mother want us to do if she could speak for herself right now? She’s having more trouble breathing. Do you want us to “‘do everything?’”
Unfortunately, this is a very common scenario at hospitals in Hawai‘i. Sometimes, even when people have thought about these things and discussed them with their doctor, they haven’t sat down and talked with their family. And, yet, it is the family that the doctors and nurses turn to for answers.
No one says that conversations about these things are easy. They are not easy. So how do you get started? Who should be involved? In Hawai‘i, one place to turn is Kokua Mau, Hawai‘i Hospice and Palliative Care Organization. Kokua Mau knows these conversations are crucial and it invites you to use its free resources to help explore options and begin the conversation.
Kokua Mau is a group of volunteers from many organizations and professions who have joined together “to weave a lei of caregiving and support so that the people of Hawai‘i facing serious illness can live in the place of their choice, with relief of pain and suffering and according to their values, beliefs and traditions.” (Kokua Mau Mission Statement)
Kokua Mau has information for individuals, families and health professionals. Its website (www.kokuamau.org), has direct links to community resources, such as downloadable Advance Directive forms and printable information that covers topics that we often find difficult to talk about. For instance:
- If someone is not able to eat, what are the pros and cons of tube feeding? (You can view or download a guide for decision making about tube feeding on Kokua Mau’s website.)
- What is POLST? (Physicians Orders for Life-Sustaining Treatment, a portable doctor’s order that makes your wishes known.)
- What are the pros and cons of CPR for someone who is elderly and frail? (Did you know that among this group CPR is less than 5 percent effective?)
Along with written resources, Kokua Mau has a Speakers Bureau that can meet with your group to start the conversations that we all need to have.
As our state’s nonprofit hospice and palliative care organization, Kokua Mau recently received national recognition with the 2013 Trailblazer Award from the National Hospice and Palliative Care Organization.
So, what happened with Auntie K? Fortunately her son and other family members began to remember that when her brother had been hospitalized, Auntie K had spoken of what she would want if that happened to her. Because of this, they were able to come together as a family and follow her wishes. The members of Kokua Mau hope that with the use of its free resources, none of you will ever end up at the bedside of your loved one wondering what she or he would have wanted.