InPractice
DECEMBER 2014
Understanding and Caring for Patients
with Advanced Complex Illnesses
Understanding and Caring for Patients with
Advanced Complex Illnesses
As medical treatment has evolved in
the last century, more patients survive
what once were life-ending events and
now live long enough to suffer from
Patricia Czapp, MD
Lou Lukas, MD
Anne Arundel Medical Center (AAMC)
is fortunate to have experienced
physicians on medical staff to guide their
complex care, including Lou Lukas,
MD, chief medical officer for Hospice
of the Chesapeake; Aimee Yu, MD,
pulmonologist and medical director of
AAMC’s critical care unit; and Patricia
Czapp, MD, a primary care doctor and
AAMC’s chair of clinical integration.
These three experts convened recently to
share their expertise in dealing with this
challenging population.
Dr. Lukas describes advanced complex
illness (ACI) as a disease or condition
marked by high, though temporally
unpredictable, mortality and by frequent
or intense healthcare utilization. “It’s the
point where the risk-to-benefit ratio of
treatment is skewed toward risk, and the
burdens of treatment may outweigh the
benefits,” she says.
ACI typically involves one of three
trajectories: cancer, end-organ damage
(e.g. CHF, COPD, ESRD) or medical
frailty with or without dementia.
Dr. Czapp notes, “ACI is progressive,
regardless of what we do. I ask patients if
the standard treatment they’ve received for
their disease has helped them maintain or
improve their quality of life and regain lost
functionality. If it has not, they likely have
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AAMC INPRACTICE | DECEMBER 2014
Aimee Yu, MD
advanced complex illnesses.
ACI, and it’s time to have a different type
of treatment discussion.”
Anticipatory Guidance
AAMC encourages physicians to shift
into anticipatory care mode when a
patient has ACI. Dr. Lukas explains,
“Physicians have to take responsibility
for the knowledge and experience
we have, and tell patients that their
condition is progressive, with some
fairly predictable types of exacerbations.
For example, we tend to act as if
a patient with advanced dementia
or COPD getting pneumonia is a
surprise, rather than anticipating this
likelihood and considering in advance
which interventions patients and their
caregivers might, or might not, want.”
Providing active guidance is important.
Dr. Yu says, “Sometimes doctors don’t
make recommendations because we
were taught to honor patient autonomy
and not to be ‘paternalistic.’ Now we
understand that in these situations of
deep emotion and complex decisions,
patients and their families appreciate
it when we are ‘parental,’ offering
nurturing, informed advice while
respecting their need to make up their
own minds.”
Sometimes it’s a family member who
has to make the decisions. Dr. Yu
adds, “When patients can’t speak for
themselves, and the family isn’t sure
what to do, I ask caregivers to tell me
about their mom. What does she like
to do? How did she grow up? And
knowing Mom, what do you think we
should do now? I make it clear that I
care about the person and I tell them
up-front I’ll be honest with them and let
them know how things are going. The
family wants to see that you’re making
an effort and caring. That approach
works across cultures.”
Weigh the Benefits and Burdens
of Interventions
Dr. Yu says, “I explain that the body has
a budget of energy. Chemotherapy can
zap that energy store without benefit,
and sometimes even cause harm.
Treatments are seductive and hard to
turn down. For example, it’s not
broadly known that inserting a feeding
tube will actually hasten death in
patients with dementia. The American
Thoracic Society has issued new
guidelines that contraindicate feeding
tubes for these patients.”
If family members argue among
themselves regarding the appropriate
course of care for their loved one, Dr.
Czapp suggests, “Physicians can tell
them that it’s not our decision to make.
Patricia Czapp, MD, a primary care doctor and AAMC’s chair of clinical integration and Aimee Yu, MD, pulmonologist and medical director of AAMC’s critical
care unit convened recently to share their expertise in dealing with the challenge of patients with advanced complex illnesses.
The patient’s body has already made the
decision. If a patient or family member
says, ‘I’m holding out for a miracle,’ you
can say, ‘Me, too, and let’s prepare in
case that doesn’t happen.’”
Dr. Yu relays a powerful story about
one elderly man in the ER who had
advanced esophageal cancer. “The
family was urging that all possible
interventions be used. The patient was
weak, but alert. Using all the breath he
could muster, he slowly whispered a
single word: ‘dig-ni-ty’. That turned the
family around immediately.”
Dr. Czapp notes that family members
who want futile, aggressive treatments
“may equate these aggressive
interventions with love. We need to
help them see that in cases like these,
love can be expressed by providing
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AAMC INPRACTICE | DECEMBER 2014
compassionate care that respects the
limitations of the body.”
The key is giving patients and families
enough anticipatory guidance so that
they may consider options well before
they are needed and make informed
decisions when it is time. That involves
a physician hearing the patient’s
story, analyzing the patient’s clinical
picture and guiding the care plan to
meet the patient’s goals. Dr. Yu adds,
“Ideally, physicians should make this
conversation routine. Ask patients what
their wishes are before they’re in crisis.”
Death Is Not a Medical Failure
Hospice can be an appropriate next
step for some patients. Unfortunately,
misconceptions about hospice abound
not only with the public but also in
the medical community. The three
physicians note that their profession
has tended to view death as a medical
failure, rather than a natural part of life.
And the final stage of life, the point
when care should most focus on the
person, not the disease, offers patients
and their families great opportunity for
personal and spiritual growth—if we
provide the right resources and allow
them enough time. Dr. Czapp says,
“Physicians should ask themselves, ‘Can
we ever get this patient back to where
he was before? If not, is it okay for us to
continue solely with this conventional
treatment, or is it time to offer
treatment that fits this patient’s unique
situation and goals?’ We have a precious
yet fleeting opportunity to improve
both quality and quantity of life and
promote a healing, spiritual experience
for distressed families.”
MOLST: A Better Alternative
to a Living Will
AAMC encourages physicians to use
Medical Orders for Life-Sustaining
Treatment (MOLST) for patients with
ACI. MOLST is Maryland’s portable
and enduring medical order form
that became law in 2013. It conveys
orders for CPR and other potentially
life-sustaining treatments. It must be
completed for patients entering a nursing
home, home healthcare, hospice, dialysis,
or assisted living but can be useful for
anyone with serious illness, even if they
live at home. It can be completed by
a physician, physician assistant, nurse
practitioner, or medical resident.
Dr. Lukas shares the limitations of
living wills:
>> They are conditional–they start with
‘If I’m in a terminal condition…’
which isn’t always easy to tell in an
emergent situation.
>> They are often not available when or
where you need them.
>> They may not apply to specific
situations because they were written
years or decades earlier.
>> They are “suggestions” rather than
medical orders.
In contrast, MOLST is specific, timely
and offers orders that are portable across
the care continuum.
“Completing a durable power of
attorney for healthcare transfers your
medical decision-making authority to
another person when you can’t speak for
yourself. This is a good idea, especially if
you want someone other than you next
of kin to communicate your wishes for
you,” says Dr. Lukas.
Making MOLST Work
Dr. Czapp points out, “The key to using
MOLST is to understand that it can
be your friend. Don’t be overwhelmed
by it. We all have to fill out page 1,
resuscitation status. When it comes to
the specific treatments on page 2, you
only need to discuss the options that
fit the patient. For example, a CHF
patient should express an opinion about
intubation and dialysis. A patient with
dementia should express an opinion
about feeding tubes and antibiotics.”
Patients and their families can be
prepared for the MOLST discussion
by watching a YouTube video, such
as “Writing Your Final Chapter,” or
reading about MOLST on AARP.org.
The Conversation Project
AAMC encourages physicians to
help patients talk about end-of-life
issues before they become seriously
ill or incapacitated. That can begin to
shift our culture’s tendency to push
potentially harmful or futile treatments.
To facilitate conversations about care
choices, providers can refer patients and
families to The Conversation Project
(theconversationproject.org).
The site contains a “conversation starter
kit” in both English and Spanish that
can help families start talking about
what they want, and helps patients talk
with their doctors.
For more information, visit
askAAMC.org/Conversation
Consider the facts.
More than 90% of the
people surveyed
think it’s important
to talk about their loved
ones’ and their own
wishes for end-of-life care.
Less than 30% have
discussed what they or
their family wants when it
comes to end-of-life care.
Source: National Survey by The Conversation
Project 2013.
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AAMC INPRACTICE | DECEMBER 2014
60% of people say that
making sure their family
is not burdened by tough
decisions is “extremely
important.”
56% have not
communicated their
end-of-life wishes.
Source: Survey of Californians by the
California HealthCare Foundation (2012)
80% of people say that
if seriously ill, they would
82% of people say it’s
important to put their
want to talk to their
doctor about
end-of-life care.
7% report having had an
wishes in writing.
23% have actually
done it.
70% of people say they
prefer to die at home.
70% die in a
hospital, nursing home,
end-of-life conversation
with their doctor.
Source: Survey of Californians by the
California HealthCare Foundation (2012)
or long-term-care facility.
Source: Centers for Disease Control (2005)
Feeding Tubes for Patients
With Advanced Dementia?
Feeding tubes are rarely
appropriate for those in the
final stages of dementia and
are no longer able to feed
themselves. Rather than
helping the patient gain
weight or live longer, they
often promote discomfort
and hasten death from
complications such as
infection, aspiration and bed
sores. Further, patients with
advanced dementia will try
to pull out the tube, leading
clinicians to order restraints
or additional drugs.
In contrast, hand-feeding by another person gives the patient social stimulation and
promotes enjoyment of what food and drink they are able to take in. They are also less
likely to aspirate when hand-fed by another person than when fed by a tube.
It is important to remember that when dying patients ultimately lose their sense of
thirst and hunger, and refuse food or drink, it is a natural part of the dying process and
does not cause them discomfort.
If your patient with advanced dementia is having trouble with self-feeding, first
consider discontinuing certain medications that may contribute to eating problems,
including quetiapine, lorazepam, zolpidem, oxybutynin, alendronate, and donepezil.
If that doesn’t help, recommend hand-feeding. If they are still losing weight or
ultimately refusing food and drink, they have reached the final stage of life. Calling
in hospice at this point will help support the family through this difficult time and
provide home-based services that are more comfortable for the patient.
Source: ChoosingWisely.org
AAMC Provides
Palliative and
Hospice Care
AAMC has long supported providing
palliative and hospice care to patients
with ACI. Dr. Lukas describes palliative
care as “optimizing a person’s quality
of life by providing symptom relief,
patient-directed care and caregiver
support. It anticipates, prevents and
treats suffering and can be provided
with or without curative care.”
Hospice care has a similar teamoriented approach to medical care,
pain management and emotional
and spiritual support tailored to the
patient’s wishes. However, hospice
patients have discontinued curative
care for their terminal illness.
As Dr. Lukas points out, “At the center
of hospice and palliative care is the
belief that each of us has the right to
die pain-free and with dignity, and that
our families will receive the necessary
support to allow us to do so.”
AAMC partners with Chesapeake
Palliative Medicine to provide
palliative care to community residents,
including:
>>Controlling difficult symptoms
>>Negotiating realistic goals for care
>>Estimating and communicating
prognosis
Choosing Wisely® is a national
initiative to promote conversations
between patients and their doctors
about which tests and treatments are
truly necessary. For more information,
visit askAAMC.org/ChoosingWisely.
>>Facilitating challenging family
meetings
>>Coordinating treatment teams
>>Managing end-of-life situations
Visit askAAMC.org/Palliative or call
443-481-5663 for more information.
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AAMC INPRACTICE | DECEMBER 2014
Nonprofit Org.
U.S. Postage
PAID
Annapolis, MD
Permit No. 179
Anne Arundel Medical Center (AAMC),
is a not-for-profit regional health system
headquartered in Annapolis, Maryland,
serves an area of more than 1 million people.
In addition to a 57-acre Annapolis campus,
AAMC has outpatient pavilions in Bowie, Kent
Island, Odenton, Pasadena, and Waugh Chapel.
InPractice delivers information designed to
help you manage your medical practice and
enhance patient care. For more information
on AAMC services, visit askAAMC.org.
Caring for the Caregiver
One of the greatest challenges for caregivers is taking time
for themselves. They often feel guilty taking time away from
their loved one to meet their own needs. The “sandwich
generation”—middle-aged women or men who care for both
their children and parents—are especially vulnerable.
Suggestions for caregivers are:
>>Accept help from others and tell them what you need.
>>Focus on what you can provide and minimize feelings of
guilt if things aren’t perfect.
>>Join a support group.
>>To manage stress, seek social and emotional support
from family and friends.
>>Stay as healthy as possible, making time for sleep,
healthy food and exercise.
>>Take advantage of available resources.
Working with Medicare
Medicare pays for intermittent skilled nursing care,
intermittent home health aide services, physical therapy,
continued occupational therapy, and speech pathology for
eligible home-bound patients with a physician’s order.
Currently, Medicare does not cover 24-hour-a-day care at
home, meals delivered to the home, homemaker services,
or personal care given by home health aides if this is the
only care needed.
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AAMC INPRACTICE | DECEMBER 2014
Caregiver Resources
Alzheimer’s
Association
800-272-3900
Alz.org
Chesapeake Palliative
Medicine
443-481-5663
cpmedicine.org
Children of Aging
Parents
239-594-3222
Agingcare.com
Family Caregiver
Alliance
800-445-8106
Caregiver.org
Generations United
202-289-3979
Gu.org
Hospice of the
Chesapeake
877-462-1102
HospiceChesapeake.org
Maryland Department
of Aging
410-767-1100
Aging.Maryland.gov
Maryland Technology
Assistance Program
800-637-4113
Mdod.maryland.gov
National Family
Caregiver Program
202-619-0724 or aoa.gov/
aoa_programs/hcltc/caregiver
The Well Spouse
Foundation
732-577-8644
WellSpouse.org