Live and let die

This is what (almost) 60 years looks like for our 50^th state from my recent wikiwiki (super fast) trip to Hawaii. 

Lucky you (seniors) live Hawaii! 

“In some circles, Hawaii’s admission to the Union was opposed because of its racial diversity; only about one-quarter of residents here were ‘white.’  So it was, in 1959, that Martin Luther King, Jr. pointed to Hawaii ‘as a place where we see the glowing daybreak of freedom and dignity.’ … Hawaii has among the highest housing costs nationwide. It also has among the lowest wages when accounting for cost of living.” —"King also sought economic justice,” Honolulu Star-Advertiser (January 21, 2019)

Hawaii State Capitol's statue of Queen Liliuokalani (1838-1917), Hawaii’s last monarch who was illegally overthrown on January 17, 1893, leading to Hawaii’s annexation to the U.S. in 1898, and then statehood on August 21, 1959 … almost 60 years ago.  At age 72, Queen Lili was granted a lifetime monthly pension of $1,250 effective July 1911 by the Territory of Hawaii Governor Frear.  Descendants of Hawaii’s monarchy claim sovereignty over the islands, and the Hawaiian Kingdom Government wants the U.S. to return lands to Native Hawaiians. 

Don’t worry, eat happy 😊

On the day before the 126^th anniversary of Hawaii Kingdom’s overthrow, I joined folks of all ages for the 30^th Biennial Legislature Opening at Hawaii State Capitol (where I had been a teen executive intern at the State Attorney General’s Office).  There was music by 70-year-old Henry Kapono inside the House chamber, tabling by community advocacy groups (Raise Up Hawaii seeks to increase state hourly minimum wage of $10.10 to living wage of $17) and poi pounding in the courtyard, and a complimentary smorgasbord of prepared local foods and fresh produce offered in the offices of local politicians.

Talofa to 71-year-old Mike Gabbard, Hawaii State Senator and vegan, who was born in American Samoa! He is father of Hawaii’s U.S. Representative Tulsi Gabbard, who announced her campaign to run for U.S. President in 2020; no longer like her father, she apologized for her earlier support of her father’s stance against gay marriages.  (In 1972, U.S. Representative Patsy Mink was first person from Hawaii to run for President ... Honolulu’s airport should have been named after Patsy Mink, co-author of Title IX Equal Opportunity in Education Act, instead of an “accused serial rapist.”) 

Gabbard Ohana (family) prepared vegan food: mock chicken drumstick "bones" were made of sugar cane! Mike’s family operated Natural Deli in Down to Earth Natural Foods store, near University of Hawaii.

Hawaiian Airlines pilot Kai Kahele was appointed Hawaii Senator from Big Island to take the place of his late father.  His office offered build your own mixed plate: futomaki (sushi), chow mein, meat and macaroni salad.

Kai played ukelele with two other performers outside his office.

Kai's family joined the party

Later on MLK, Jr. Day, Kai announced his 2020 bid for U.S. Representative seat held by Tulsi Gabbard.

Buffet of local foods including sushi, rice, noodles, fried jun, mochiko chicken …

Poke with carby rice, noodles and French fries!

Representative Cedric Gates offered green onions and bananas from Waianae.

Across from Hawaii State Capitol is Hawaii State Library, where no eating ...except maybe in its courtyard!

Geriatric care

After the Library closed at 5 pm, strolled over to Queen’s Medical Center (QMC), founded in 1859 by Queen Emma and King Kamehameha IV (and where I had volunteered as a high school student exploring health care profession).  QMC ranks in U.S. News & World Report’s top 10% of hospitals for Geriatrics!  Also, QMC is the first hospital in Hawaii and only the fifth in the nation to receive Level 1 Geriatric Emergency Department Accreditation (GEDA), recognizing the highest level of excellence in care for older adults, by the American College of Emergency Physicians (ACEP).  QMC’s Geriatrics Housecall program for homebound elderly rocks —mahalo nui loa to awesome staff (nurse practitioners Joan Maeshiro and Jake Moore, and Dr. Sarah Rasca) who keep me posted (long-distance caregiver, not to be confused with “Daughter from California” syndrome)! 

Kokua Mau’s Palliative Pupus’ Learn and Mingle at Queen's Conference Center began with potluck food and introductions by attendees.  After hearing from woman visiting from Japan and yours truly from San Francisco, Kokua Mau’s Executive Director Jeannette Koijane asked if we were on palliative tour?  Island Hospice team presented case study of a 90-year-old Korean patient diagnosed with liver cancer and memory impairment, felt she was in prison at her foster care home, issues with language and finding willing power of attorney for health care.

QMC Medical Director of Palliative Care Dr. Dan Fischberg announced upcoming events, which are posted at Kokua Mau’s website. Wished I could extend visit to attend workshop on Critical Communications with Seriously Ill Patients and Families presented by Dr. Anthony Back.

Participated in free Applied Suicide Intervention Skills Training (ASIST) at Sutter Health Kahi Mohala in Ewa Beach.  As participants were mostly military personnel, they knew OCOCA (Our Care, Our Choice Act) as mnemonic OCOKA for survival (versus aid-in-dying)?  Older veterans age 55+ have the highest incidence of suicide, representing nearly 60% of all veteran suicide deaths.

Housing/homelessness

Homeless encampments were visible (though I took no photos to respect privacy, instead took photos of murals around Kakaako area) because Honolulu Mayor Kirk Caldwell decided to suspend enforcement of “sweeps” or removing homeless people from streets during January 14 to 25, to facilitate a more accurate Homeless Point-in-Time Count over four nights, January 22 to 25.  I viewed the online training, surprised to learn Oahu’s annual Count was more like U.S. Census involving face-to-face interviewing.  In contrast, San Francisco’s biennial Point-in-Time Count was one night only, driving through streets. 

“Drug dealing, intimidation, violence, crime, filth and an overriding disregard for others are not the elements that make up a healthy environment for children. …. Those who use our walls, doorways and steps as toilets, who openly deal in drugs, who are mentally ill, and ignore those outreach officials who want to get them into transitional housing, rehabilitation and jobs programs.  They are the ‘hard core’ homeless who really need tough love.” –Loretta Yajima, CEO of Hawaii Children’s Discovery Center in Kakaako, “Homeless may force center to close,” Honolulu Star-Advertiser (January 16, 2019)

Like San Francisco, the high cost of living in Honolulu can push older adults on fixed income to lose their housing and become homeless. 

Hawaii has the highest per capita rate of homelessness in the nation: 51 homeless per 10,000 people.  Roughly 85% of Hawaii’s homeless are local born, or “made in Hawaii.”  In response, Hawaii earmarked $30 million for Ohana Zones:  designated public lands with easy access to sanitation, clean water, and social services where homeless individuals will be allowed to set up camp and live temporarily.  Ohana Zones bill also includes a pilot project to treat those with severe mental illness.  In the long run, this measure is intended to save money from reduced usage of emergency services, fewer sweeps and less cleanup.

Last year, as Hawaii State Senator (elected Lieutenant Governor in November 2018), emergency room Dr. Josh Green introduced a bill that would allow doctors to prescribe housing as a cure for chronic homelessness, which would be classified as a medical condition and require insurance companies to cover treatment. 

Lucky you die Hawaii?

In 2014, terminally ill cancer patient Brittany Maynard traveled from California to Oregon to avail herself of the state’s Death with Dignity Act (DWDA).  Effective January 1, 2019, Hawaii became the 8^th U.S. jurisdiction to legalize medical aid-in-dying (MAID) … will Hawaii become the latest travel destination for terminally ill people seeking MAID? 

To find out this and more, I spent Saturday morning attending MAID Workshop, hosted by Hawaii Society of Clinical Oncology (HSCO), at University of Hawaii School of Medicine in Kakaako.  On April 5, 2018, Hawaii Governor David Ige signed Our Care, Our Choice Act (aka OCOCA, HB 2739) into law, allowing mentally capable, terminally ill (prognosis of six months or less) adult residents of Hawaii to request aid-in-dying medication from their physician so they can self-administer to bring about a peaceful death.

The American Medical Association officially remains opposed to MAID, stating in its Code of Medical Ethics (2016): “Physician-assisted suicide is fundamentally incompatible with the physician's role as healer.”  

“The debate is over.  Medical aid in dying is now an authorized compassionate end-of-life care option in Hawaii, and now we need to focus our attention on successful implementation so that dying people have real access to the law.  Doctors should be putting their patients’ autonomy and needs first.

…Hippocratic Oath is an ancient Greek document that is no longer used at any U.S. medical school graduation ceremony…many of its important principles endure while the application of those ideals has evolved over time.

          Modern standards of medical ethics can be found within it: Patient autonomy. Beneficence. Non-maleficence. Social justice. And most of all, duty to one’s patients and the patient’s desires and goals.  As medical professionals, one of our greatest challenges is to respect our personal commitment to do no harm in the face of the ambiguities resulting from advanced medical technology.

          My perspective is that ignoring a patient’s suffering or autonomy is harm.  We can no longer fight disease at any cost, but must help patients weigh risks, benefits and quality of life as they make their own medical choices…

          The confusion created by continued use of the phrase ‘assisted suicide’ among those who oppose the practice of medical aid in dying… These patients are not suicidal. They want to live, but have been handed a death sentence by their disease. This law allows them not to be forced to prolong a painful dying process and to choose when, where, and with whom it will happen.

…Coming face to face with a patient who knows that he/she is dying is profound, and I believe it is my highest calling to be able to take their hand and say: ‘I am here to help you. I will not abandon you.’”—Dr. Chuck Miller, “The oncologist explains the benefits of a new law that allows medical aid in dying,” Honolulu Star-Advertiser (January 18, 2019)

Breakfast and agenda.  Someone from Palliative Pupus recognized me, “Wow, you’re really on the palliative tour!”  

Welcome by Charles F. Miller, MD, FACP, retired oncologist from University of Hawaii Cancer Center.  He presented Review of OCOCA:

·       History from 1998 Blue Ribbon Panel, then 20 years later HB 2739 passed with huge majorities, signed by Governor Ige into law

·       Detailed requirements: 3 voluntary requests for drug (2 oral requests made 20 days apart, 1 written request signed by 2 witnesses); both attending and consulting physician must agree patient is eligible; 3^rd provider (psychologist, psychiatrist, or LCSW) must confirm patient’s mental capacity

·       Informed consent after receiving information about all other end-of-life options

·       Complete statutory Final Attestation form within 48 hours prior to ingesting aid-in-dying medication, reiterating intent to take medication

Dr. Miller discussed challenges such as some cancer patients not making 20-day waiting period between two requests, 3^rd provider confirming patient’s mental capacity, and 6 required forms.  In his 39 years as an oncologist, not a single patient diagnosed with cancer was not depressed, clarifying that depression does not preclude mental capacity.

Dr. Miller introduced Health Professionals’ Roles and Responsibilities with professionals from Oregon and California: 

David Grube, MD, Compassion & Choices, disclosed that he has practiced family medicine for 35 years in Oregon.  Since Oregon’s DWDA became law in 1997, he has worked with 30 patients who requested it—15 as attending physician and 15 as consulting physician. Oregon’s experience has improved hospice and palliative care with 95% of dying using hospice and at home, and one-third who obtained prescriptions did not take them.

·       Liability/professional protections: no duty to participate; no liability for medical providers if act in good faith under Hawaii OCOCA; no disciplinary action against licensed physician by any state medical boards for participating/declining to participate

·       How to respond to request: be prepared; listen; clarify request; listen; affirm commitment not to abandon; listen; assess ‘root causes’ of request while respecting patient autonomy/decision-making; provide education to patient/family; seek counsel of peers/mentors if need support

·       Clarifying request: immediate, nonjudgmental, empathetic; open-ended questions (“what do you mean by…” “What type of assistance do you want?” “How do you envision your last day?”); inquire of suicidal thoughts, plans; be cognizant of personal biases, body language, counter-transference, etc. (Atul Gawande said, “We want autonomy for ourselves, safety for others.”)

Dr. Grube related how UCSF palliative care physician BJ Miller’s greeting, “Good morning mortals,” is a reminder that we all die; death is not the enemy, but terminal suffering is the enemy.  He discussed barriers to MAID from different parties: patient’s family, physician, hospice, hospital system, pharmacy – objections may be faith-based conscience.  He emphasized that patient seeking MAID needs to have volition to begin/rescind self-ingestion, including feeding tube, using straw (someone else can hold cup), rectal catheter; injection is not legal.  Compassion & Choices resources: 

·       Doc2Doc 

·       Pharmacist2Pharmacist

Tracey Bush, LCSW from Kaiser Permanente Southern California, discussed coordinator’s clinical roles:

·       process navigator: referral and linkage with palliative care/hospice, identification and linkage with attending physician/consulting physician/psychiatrist, coordination with pharmacy for medication consultation and home visit, facilitate video visits  

·       compliance: ensure patients meet minimum requirements per statute (age, decision-making capacity, residence, voluntary request, documented 6 month prognosis, physical and mental ability to “self-ingest” aid-in-dying drug); ensure physicians complete assessments and document in medical record; ensure state mandated waiting period adherence; ensure completion and submission of state required paperwork; ensure patient completion of written request paperwork, including appropriate witness signatures as final attestation and submission to state; support pharmacists in reinforcing education about medication preparation, ingestion and disposal

·       psychosocial evaluation: family involvement and support; religious/spiritual/cultural considerations; patient motivation for MAID; initial decision-making capacity assessment (psychiatrist referral recommendation; California does not allow LCSW to make mental capacity determination); financial assessment (medication affordability, apply for patient assistance fund); bereavement services referral & coordination (post MAID)

·       physician/staff education and debrief

Tracey reported that about 3,000 Kaiser patients have inquired about MAID, but one-third “drop off” during stages because they may be too ill, die before completing process, or change their mind: 1,000 patients from Southern California, and 2,000 in Northern California, with 65% actually ingesting.  

Angela Forcucci, PharmD of Advanced Care Pharmacy, presented The Pharmacist’s Roles and Responsibilities in MAID.  Medicare or federal funds will not pay for MAID drugs.

Secobarbital no longer available; DDMP2 cost to patient ranges $5,000-$7,000, ingest within 2 minutes before fall asleep; sometimes takes longer 20 minutes to 24 hours to fall asleep if obese, high dose narcotics, healthy heart; side effect is respiratory like gasping.

According to DOH, no pharmacies in Hawaii can make DDMP2, a compounded medication, and Hawaii law prohibits compounded medications from out-of-state.  (Read Jennie Dear’s “The Doctors Who Invented a New Way to Help People Die: The two lethal medications used by terminal patients who wish to end their own life recently became unavailable or prohibitively expensive,” published in The Atlantic, January 22, 2019.)

Barriers to dispensing include: identifying participating physicians and pharmacists; time to complete process (20+ days); controlled prescription requirements; availability of drugs; expense of drugs; preparation (compound); insurance billing; documentation; dispensing (delivery, pick-up, mail).

Integrating & Implementing the Act into Health Systems – locals unite!

Lorrin Kim, MA, Chief of Office of Planning, Policy and Program Development at Hawaii State Department of Health (DOH), emphasized Hawaii’s OCOCA is the “most rigorous” in the nation to ensure safeguards protect patients.  DOH is implementing, not regulatory, agency; Department of Attorney General can pursue penalties for violations.  DOH’s Advisory Council strongly recommends discussing all end-of-life options, including concurrent enrollment in hospice.  Lorrin spoke with first responders, noting that coroner in neighbor islands is the police chief, so he emphasized documentation (POLST, OCOCA) to avoid yellow crime scene tape.  He expressed concern that patients “might want to do it (MAID) in Sunset Beach where they married” and stated that patients should not take aid-in-dying medication in a public place.  Another concern is social determinants that act to limit OCOCA access to highly educated patients who know how to work system. 

Keola K. Beale, MD Kaiser Permanente, talked about navigator’s key role in keeping track of timelines as physicians can be overwhelmed by patient care. 

Daniel Fischberg, MD, PhD, FAAHPM Queens Health System, talked about one-page handout is not substitute for counseling support, no ingestion of aid-in-dying allowed on hospital premises, and upcoming workshops at QMC and UH Medical School with Dr. Anthony Back on communicating OCOCA. 

Jeannette G. Koijane, MPH Kokua Mau Director, said all hospice providers will continue to support, not abandon, patients who elect OCOCA; hospice will continue to be paid by Medicare; no hospice MD will be attending or acquiring medication for OCOCA; recommended earlier referrals to hospice which remains an underutilized benefit. 

Panel Discussion and Q&A with presenters plus Barbara Higa Rogers, LCSW, MPH, PsyD Hawaii Psychological Association, and John Radcliffe, Patient Representative diagnosed with terminal colon cancer almost 5 years ago.  John said he is enrolled in hospice and intends to be first person to obtain aid-in-dying prescription by the end of the month.

Telehealth was gray area: Lorrin said telehealth was ok for mental health, but law silent for attending and consulting MD.  Dr. Grube said telehealth ok for all providers in Oregon.    

Last year, Oahu had record-breaking 29 pedestrian deaths … perhaps aided by removal of pedestrian crosswalks, sometimes by mistake! 

While walking from Kakaako toward Ala Moana, I stopped at this intersection on Piikoi and found no crosswalk on makai (toward ocean, right side in photo above).  So instead of directly crossing in the direction of Ala Moana on makai side, I had to wait and cross three separate pedestrian crosswalks, almost half-circle, to get to my destination.  Woah, why not make cars slow down, instead of slowing down pedestrians baking in hot sun?  Also learned bus stops have been removed in the name of pedestrian safety, and Honolulu City Council proposed TheBus fare increases: senior/disability pass from annual $35 to $110!   

Oahu’s prioritization of automobiles and parking has created a public health nuisance: congestion, traffic accidents/deaths, climate change, air and noise pollution, and chronic diseases associated with sedentary lifestyles. In “Storing cars a waste of urban space” (Honolulu Star-Advertiser, January 13, 2019), sustainable transit advocate/transportation planner Chris J. Johnson cites cities like San Francisco that are moving towards reducing driving/parking in favor of public transit, pedestrian zones and dedicated bike lanes, thus creating easier flow and circulation which are good for businesses.

AARP Chinese New Year’s Celebration

At Ala Moana Hotel, Hawaii AARP Director Barbara Kim Stanton shared her memories of celebrating Chinese New Year, thanks to her Chinese mother (surname Leong). Honolulu ranks in the top cities for worktirement, so kupuna continue to contribute their expertise in the workplace.  In her mid-50s, Barbara launched her encore career as Hawaii’s AARP Director since 2005 – just a year after she was struck by an SUV while crossing the street and feeling like she had “fast-forwarded into old age” due to injuries that left her depending on others to perform activities of daily living.  She really walks the talk when it comes to pedestrian safety, especially for kupuna, and she is becoming one of my favorite tourist attractions (2016 HPGS, 2017 PacRim conference)!

Martin “If Yan can cook, so can you!” Yan of San Francisco Bay Area joked that he usually chops apart chicken in 15 seconds but he slows down to 18 seconds in Hawaii!  He also joked about his plan to retire in Hawaii with Hawaii Regional Chefs: breakfast at his cousin Sam Choy’s, lunch at cousin Alan Wong’s, and then wash dishes after dinner at Roy Yamaguchi’s.  

Judith Graham’s article about Elder Orphans, originally published by Kaiser Health News on October 4, 2018, appeared in Honolulu Star-Advertiser about four months later.