Photo: Carla Reese, caregiver for Dustie, her partner of 44 years, explained the benefits of palliative care. (Image by Debbie Juan)
STANFORD, Calif.--Efforts in the United States by government, hospitals and many hospice and palliative care programs have slowly planted the seed of the end-of-life care movement in Chinese communities here in recent years. Along with learning about and writing advance health care directives, most of Chinese adults bravely say they know life has its end and they want to take a graceful bow while the theater curtain falls on their lives.
However, exiting this stage of life beautifully is often difficult when the time comes, unless people have planned ahead. This is why education for the concept of successful aging is so important
High Cost of Intensive Care
Getting a serious illness is not only impossibly hard work for the patient, but it also becomes a major project for family members and medical practitioners involved. For example, speaking to reporters at Stanford seminar this summer, Lisa M. Krieger described her award-winning 2012 series for the San Jose Mercury News, “The Cost of Dying” [www.mercurynews.com/cost-of-dying].
The series began by describing her father’s final 10 days at Stanford University Hospital. Krieger’s Dad, 88, suffered from dementia and was not referred to palliative care. Her articles documented his experiences in Stanford’s ER and intensive care unit (ICU), the treatment processes, the daily cost and the medical decisions she made for her loving father, age 88, before he passed away.
Although she praised his doctors for their care, she noted, “After all, the modern medicine had carried Dad’s body beyond what it could bear.”
Following his death in 2011, she decided to share her family’s experience and raise concerns she had about his unpleasant final 10 days and how others might avoid both the ICU treatment and cost.
Stating, “If I could, I'd rather not recall these memories,” Krieger recounted her father’s ordeal. “Day 1: Rush to ER due to unknown bacterial infection on the leg , which caused septicemia; used antibiotics, intubation to keep him breathing and boost blood pressure. Cost : $51,147. Day 2: Transfer to ICU. Keep intubation for breathing, antibiotics, blood cultures to identify microbe and sedation. Cost : $56,604. Day 3, Expanding infection on leg, try more aggressive and specialized antibiotics. Mentally is still unresponsive, brain scan is taken to know if catastrophic bleeding occurred. Refuse feeding tube. Cost : $52,727.”
The total charge for the grueling 10 days was $323,658. Medicare paid $67,809, and patient family paid about $10,000 out of pocket. For the rest of expense, private insurance paid its part after negotiating with hospital--then hospital wrote off the balance.
Krieger stressed that the “write off” means the hospital will recover that balance over time through other patient’s private insurance and fundraising—adding to the nation’s health care bill for treatment that few want at life’s end for themselves or their loved ones.
Far beyond the medical bills, she and other at the seminar said, the most difficult decision for family members to make come at critical moment when a family member, who may be unable to decide for himself or herself, is fighting with illness: Will you choose advance medical weapons to fight at any cost, or think whether your love one can handle the aggressive battle?
-- Debbie Juan
Periyakoil, whom her patients call “Dr. V.J.” spoke recently at a New America Media seminar for ethnic media reporters that was sponsored by the California Health Care Foundation and hosted by Stanford University.
She explained that although many associate palliative care with hospice for the dying, palliative treatment begins well before the terminal months of hospice care and comforts patients physically by controlling their pain and managing their symptoms, as well as spiritually and psychologically while they receive medical treatments.
Improving Life for Patient and Caregiver
Speaking at the seminar, Carla Reese, the main caregiver for her partner for over 44 years, said that although she works at the Palo Alto Medical Center, she did not realized until recent years that palliative care is such a helpful service.
Her partner Dustie struggles with chronic obstructive pulmonary disease (COPD). Reese recalled, “Six years ago we were told that disease has come to the end stage, but we didn’t feel that she was in such serious condition at all since she was talking, laughing as usual and even doing home tasks herself.”
Then a couple of years ago, Dustie was rushed to an emergency room one night to treat a severe infection, and her condition suddenly declined. “That made us traveled all the time between the hospital and ER."
One day, Dustie’s primary physician announced, “We have to transfer you to the palliative care clinic.“
When Reese heard the words “palliative care,” she thought Dustie must have “one leg in the coffin.”
But after meeting Periyakoil, who is also associate director of Palliative Care Services at the VA Palo Alto Health Care Center, Reese she learned how such care can actually improve life for both a patient and caregiver.
Reese recalled that Dr. V.J. changed Dustie’s treatment, managing her pain and symptoms medications, thus reducing sudden crises with rush trips to the ER, while also reducing Reese’s caregiving workload and stress. With her condition stabilized, Dustie found herself able to do more for herself at home—and to relax enough to begin laughing again, something she had not done much since becoming ill, Reese said.
She emphasized, “We are having and maintaining a good quality of life in these years, and I hope Dustie stays in this care as long as she needs it.”
Periyakoil noted that although established Western medical treatment focuses only on trying to cure patients, palliative care aims to integrate comfort care with medical treatment together for people diagnosed with very serious or terminal illness, such as cancer, dementia or heart and lung related diseases.
Care Planning for Tomorrow
In a study titled “Californians’ Attitudes Toward End-of-Life Issues” (2011), the California Health Care Foundation (CHCF) surveyed 1669 adults and found that the most important concern for people is making sure their family is “not burdened financially by my care.” After worry about their families, Californians said they most wish to be “comfortable and without pain.”
The foundation also asked, “What is the main reason you have not talked [to your family] about your wishes for end-of-life medical treatment?” Study participants said the number one barrier is: “Too many other things to worry about right no.” The next reason was, “Don’t want to think about death or dying.”
Geriatrician and palliative care physician Rebecca Sudore, MD, of the University of California, San Francisco, discussed how to break through the complex of talking these issues, suggested that family members open a discussion about learning what choices a loved one wants to make—and fill out an advanced heath care directive form.
Sudore said such forms are not only for helping people understand various of emergency measures, but also enables anyone to designate a medical decision maker while there is plenty of time to screen the right person, someone who will respect and honor a person’s medical wishes when the critical moment comes.
Stanford’s Periyakoil, said one of the key goals she stresses is that advanced consultation on the options offered by palliative care enables patients and their family members to discuss and understand a patients’ medical condition. They learn more about the benefits and burdens of emergency treatments and likely outcome, survival rates, medical expenses and so on.
Well-informed patients and caregivers, she said, typically find that their fears lift. The become more confident and clear about making appropriate medical plans.
For example, increasing numbers of Americans are filling out a Physician Orders for Life-Sustaining Treatment (POLST), signed by their physicians and making their practical end-of-life wishes known to their family members. A POLST form, combined with a more detailed advance directive, can help your love ones and medical-decision agents make the best choices without regret and avoid the unnecessary conflicts at the most critical moment.
People should discuss POLST with their doctor. Start by asking what a POLST is and when should patients sign this form?
Knowing Your Rights
Medicare was the first health care system in U.S. to cover hospice related services. Called the Medicare Hospice Benefit) it is covered under the Medicare Part A program for hospital coverage. People may well know about “hospice care,” but may not so clear about “palliative care. Actually, hospice care is the final stage of palliative care. The services that Medicare insurance covered are:
Medical equipment (such as wheelchairs or walkers)
Medical supplies (such as bandages and catheters)
Drugs for symptom control or pain relief (may need to pay a small copayment)
Hospice aide and homemaker services
Physical and occupational therapy
Speech-language pathology services
Social worker services
Grief and loss counseling for you and your family
Short-term inpatient care (for pain and symptom management)
Any other Medicare-covered services needed to manage your pain and other symptoms related to your terminal illness, as recommended by your hospice team
Medicare’s requirement for patients to become eligible for hospice care is having two doctors certify that the person has a terminal illness and has six months or less to live.
But palliative care, which integrates the above comfort measures with acute medical treatment when needed, includes hospice care, but comes easier. The best scenario, said Periyakoil, is that palliative medicine should start at diagnosis of a serious illness.
In fact, a growing number of studies report that patients receiving palliative care at early stage experience a better quality of life and even live longer on average than those who haven’t received it.
A Good Death Is a Hard Job
“People are afraid to die because of the “unknown” and don’t know where to go,” said Virginia Jackson, chief of chaplain service at the Palo Alto VA Health Care System
Jackson said she always tell them with warmth, compassion, but also directness, ”Dying is really a hard work, but we can work together and have it well done.”
The realization that death is near and it is time to prepare to die may cause patients different levels of spiritual shock as the end gets closer. Every dying patient has a turning point. The earlier a health care professional or spiritual counselor can builds a communication channel with patient’s heart, as well as his or her mind, the easier it may be for the patient to face death without fear when final days is counting down.
“Our job is to lead and find a way out for patients, family members and their love ones, help them to release themselves from the pain of sufferings and the loss of the love ones,” Jackson said. The physical pain has painkillers, but the “heart cure” for dying awareness is the most important prescription, she stressed.
Spiritual support is a standard part of a palliative care team and can start as early as the patient enters palliative care. Also, palliative care clinics offer family loved ones grief and bereavement support, which may continue after patients pass.
A recent report by CHCF titled, “A Better Benefit: Health Plans Try New Approaches to End-of-Life Care,” stated, “In the event of serious illness, Californians strongly indicate that they would want to have care that adequately addresses pain and discomfort, as well as providing spiritual, social and cultural support – all of which are hallmarks of palliative and hospice care.”
Unfortunately, when patients really have to face end-of-life medical decisions, they either do not receive these services, or receive them too late to fully benefit from palliative treatment.
JenMei Debbie Juan wrote the original version of this article in Chinese for News For Chinese through a California Healthcare Foundation Journalism Fellowship, a project of New America Media in collaboration with the Stanford In-reach for Successful Aging through Education Program.