“Too often, people aren’t dying in ways that match the goals and values of how they live their lives,” according to the End Well Foundation, which works to address the fact that “when inevitably faced with issues of mortality, many of us — whether patient, family or clinician — will suffer needlessly for a variety of reasons, some cultural, some clinical, some a matter of access.”
I am grateful my mother, Samie Goya, made well-planned choices to ensure her life journey ended well. Mom valued her independence, so when her physician gave her a prognosis of six months to live due to congestive heart failure, she immediately requested hospice care with Hospice of Hilo (now Hawaii Care Choices), knowing that by accepting the service, she would be able to stay comfortably in her home.
When someone receives the high-touch approach of hospice care, they are saying “yes” to a team of social workers, physician, nurses, spiritual counselors, certified nursing assistants and volunteers who address not only physical pain but also essential emotional and spiritual needs — always based on one’s values and beliefs. This path empowers patients to partner in their own care, and because of this, it is common for many patients to stabilize and live long past their original six-month estimated life expectancy.
That was the case with my mother. She was admitted to a hospice home-care program and improved so much over the course of a year that she was discharged. There is a common misunderstanding about hospice care. People mistakenly think once you enter hospice, you will always die soon, that you cannot change your mind and stop the service, or once you stop, services cannot resume later. None are true. My mom got better and stopped needing hospice care. A few months later, she requested the hospice team once more, this time at their inpatient care center, Pohai Malama.
Hospice and/or palliative care is not just about the patient — it is also for the caregiver and other loved ones. My peace of mind was immeasurable, knowing I was not alone in caring for mom, that I could call the care team 24/7 whenever I had a question. That was huge! When my mom was admitted to the Pohai Malama Care Center, having her receive the higher level of care I could not provide at home, greatly relieved my stress. I was also thankful for the palliative physician’s expertise on the dying process. Mom had insisted she shower by herself before being admitted to the inpatient center and was talking until the day she died. Had it not been for the wise counsel of the doctor alerting us to Mom’s impending liver failure in a few days-time, her death would have caught us entirely by surprise. Because of the care team, Mom was not the only one who was ready for her departure.
My mother, Samie Goya, lived to be 91, and had a good life. Because of the choices she made long before her health began to decline, and throughout her chronic illness, she was able to “end well.” As her daughter, it brings me great comfort and peace. I wish this for every person in East Hawaii.
What kind of choices can you make to end well?
First, if you are at least 18, and especially over 60, you can create an advance health care directive online at www.caringinfo.org or contact Community First Hawaii at www.communityfirsthawaii.org/ ahcd-registration to sign up for the next free workshop about “Having the Conversation.”
Stating your values and beliefs — long before an illness or accident require tough decisions — is the priceless gift you give to yourself and your family. Second, if you have a serious illness, talk to your doctor about palliative care, which focuses on the prevention and relief of disease symptoms to improve quality of life.
After 35 years of serving the East Hawaii community, Hospice of Hilo changed its name to Hawaii Care Choices. In the last six years, the organization added not only a 12-bed inpatient care center to its offerings, but also expanded its programs to provide the only community-based palliative care program — Kupu Care — on Hawaii Island. This continuum of care (palliative, hospice, bereavement) can support our community members in need long before being eligible for hospice care, as well as long after, through family grief support. Learn more at www.hawaiicarechoices.org or call (808) 969-1733.
Hawaii Care Choices gives people access to an integrated resource that offers guidance and support long before life’s final moments. That said, it only helps if it is used. Do not wait to complete your advance health care directive. Do not wait until you or your loved one is so sick that needless suffering occurs, creating stress for yourself and loved ones. Follow the lesson taught by Mom. Choose to end well.
Karen Maedo is a teacher and financial adviser.
This column was prepared by Community First, a nonprofit organization led by Barry Taniguchi, CEO and chairman of KTA Super Stores, and supported by a volunteer board of local community leaders. Community First was established in 2014 to help the community respond to the health care cost crisis and support initiatives that change health care from just treating disease to caring for health. To learn more about Community First, visit CommunityFirstHawaii.org.