The great Indian leader Mahatma Ghandi, whose profound messages influenced
the world, offered the advice, “Live as if you were to die tomorrow.
Learn as if you were to live forever.”
Most of us don’t want to think about the inevitability of death,
let alone prepare for it or talk about it. If you were to suffer a devastating
illness or accident that left you incapable of expressing your preferences,
would your family and friends know what sort of medical treatments and
procedures you would wish to have?
“When we’re healthy, most of us tend to procrastinate in planning
for end-of-life care – including hospice care – or for palliative
care to alleviate pain during an extended illness, but these critical
situations can turn on a dime,” says Washington Hospital’s
Spiritual Care Coordinator Michelle Hedding, MA, RN, CHPN (certified hospice
and palliative care nurse). “A document called an ‘advance
health care directive’ lets your loved ones know exactly what your
Hedding notes that in a 2012 survey of Californians conducted by the California
HealthCare Foundation, 60 percent of people said that making sure their
family is not burdened by tough decisions is “extremely important,
yet 56 percent had not communicated their end-of-life wishes to their
families. The same survey found that 82 percent of people said it is important
to put their wishes in writing, but only 23 percent had actually done it.
To help people in the community learn more about advance health care directives,
hospice care and palliative care, Washington Hospital is offering a free
seminar on Tuesday, April 28, from 6 to 8 p.m. The seminar, which will
feature a presentation by Hedding and time for questions and answers,
will take place in the Conrad E. Anderson, M.D., Auditorium, located in
the Washington West building at 2500 Mowry Avenue in Fremont.
“Advance directives, hospice and palliative care are personal choices
about how you live, even as you face an incapacitating illness or death,”
Advance Health Care Directives Put Your Wishes in Writing
An advance health care directive lets you specify your wishes, such as
whether you want your life prolonged by any means necessary or you prefer
to have some treatments withheld. The advance directive also designates
an “agent” – and possibly alternate agents – who
should make medical decisions for you and provides instructions for what
treatments you would or would not want.
At Washington Hospital, all patients are asked if they have an advance
directive when they are admitted to the hospital. If patients do not have
an advance directive, they are provided with information about creating one.
“The best time to fill out an advance directive is when you are healthy
and in a good frame of mind, not at a hospital when you’re already
facing a health care crisis,” Hedding notes. “Anyone over
age 18 should have an advance directive. Life-threatening medical emergencies
can happen at any time, and at any age.”
Options for Advance Health Care Directives
At the seminar, Hedding will go into detail about the standard advance
directive form available at Washington Hospital. She also will discuss
other forms for advance directives that are available online, such as
“Five Wishes,” a more detailed advance health care directive
that also covers the personal, emotional and spiritual needs of the person,
not just the medical and legal issues.
“The most important thing in creating your advance directive is to
name the person you want to serve as your agent to speak on your behalf,”
Hedding says. “It’s a good idea to name up to two alternative
agents in case your first choice of agent is unable to make health care
decisions for you for some reason.”
California requires that advance directives be witnessed by two people
who know the individual making the advance directive. One of those witnesses
cannot be related by blood, marriage or adoption, and neither witness
can be designated as the agent. The individual’s physicians, nurses
or other health care providers are not allowed as witnesses. Alternatively,
the advanced directive can be notarized.
You can revoke or revise your advance directive at any time.
“An advance health care directive is not cast in stone,” Hedding
explains. “The advance directive can always be revised if you change
your mind or if your health situation changes. We will follow the instructions
in the most recent version of your advance directive.”
Hospice Care and Its History
The concept of hospice as a program to care for the dying emerged in the
late 1960s in London. The word “hospice” was borrowed from
way stations for pilgrims to the Holy Land in the Middle Ages. The first
hospice in the U.S., the Connecticut Hospice, was established in 1974,
and hospice care became more widespread throughout the U.S. in the 1980s.
“Hospice care, which was created to care for patients with a limited
life expectancy of six months, provides comprehensive support of the patient’s
body, mind and spirit,” Hedding explains. “Hospice also supports
the patient’s family and friends in the dying and bereavement process.”
Hedding stresses that rather than being a “death sentence,”
hospice is a service that helps to support a high quality of life, in
line with the wishes of patients for whatever time they have to live.
Dame Cicely Saunders, founder of St. Christopher’s Hospice in London,
noted: “You matter because you are you. You matter to the last moment
of your life, and we will do all we can, not only to help you die peacefully,
but to live until you die.”
Palliative Care and Its Relationship to Hospice
Palliative care emerged from the hospice movement, providing specialized
care for people living with serious illness, with a focus on relief from
suffering. The first U.S. hospital-based palliative care programs began
in the late 1980s.
“Palliative care is not just for patients who have cancer or are
dying,” Hedding says. “It is an extra layer of medical support
that can be offered at all stages of the illness – the earlier,
the better. Palliative care can be offered simultaneously with some curative
treatments, with those treatments ending when a person is transferred
Hospice and palliative care both are family-centered services that take
a holistic approach to caring for patients and focus on symptom management.
Both types of care involve an interdisciplinary team of professionals
in spiritual care, social work and medical care to deal with all aspects
of the patient’s needs.
“I consider palliative care and hospice care to be good nursing care
and good medical care, as well as spiritual care,” Hedding says.
“They embody a philosophy of care that focuses on the whole person.
You are a human being with all kinds of aspects to your life. With hospice
and palliative care, the care providers strive to be attentive to all
aspects of who the person is.”
To register for the free seminar on April 28, visit www.whhs.com/event/class-registration,
or call (800) 963-7070.
Washington Hospital offers assistance to people who wish to create an advance
health care directive. Health Insurance Information Service Coordinator
Kristi Caracappa is available Monday through Friday from 8 a.m. to 5 p.m.
by phone or in person. Call (510) 494-7005. Her office is located at Washington
West, 2500 Mowry Avenue, Suite 100, in Fremont.
For more information, visit www.whhs.com/advance-directives. You also can
learn more about Advance Health Care Directives and the “Five Wishes”
at www.calhospital.org/resource/advance-health-care-directive and www.agingwithdignity.org/five-wishes.php.