IDECIDELVAD

Better conversations, better decisions

A decision aid for

Left Ventricular Assist Device (LVAD)
A device for patients with advanced heart failure

Exploring
O
Options
You are being considered for an LVAD. This booklet
should help you understand what an LVAD is and
help you and your family think about what is best for
you. Your values and goals are the most important
factors in making a decision.

What are your current feelings?

• How do you want to live the rest of your life?
• What are your hopes and fears?
• What are your biggest questions?

To view a video about this decision or for an online version of this booklet,
visit patientdecisionaid.org.
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Now that you’ve thought about your feelings, let’s talk
about the details of this DECISION.

You have severe heart failure.

Heart failure is when the heart is too weak to
pump enough blood for the body. This causes
shortness of breath, tiredness, and swelling. For
most people, heart failure gets worse over time.
Severe heart failure can lead to death.

You are in a tough spot.

Your medicines are not working. Without a major heart surgery, you may die soon.
Even if you can get a heart transplant, you will likely have to wait a long time. Or you
may be someone who cannot get a transplant. Therefore, you are being considered for
an LVAD (partial artifical heart).

Many find this scary or confusing. Some patients feel pressured to make a decision.

These emotions are normal.

This is a major decision.

If your doctors feel you are eligible for an LVAD, you
are facing a major decision. Such a decision may make
some people feel uncomfortable. While no one can
predict the future, understanding what could happen may
help you to feel more at peace about your decision and be
better prepared for what happens after. While this may be hard
to think about, people in your position have wanted to know this
information.

Some patients choose to get an LVAD. Other patients decide not to get an
LVAD. The right choice really depends on how you hope to live the rest of your life.

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What is an LVAD (Left Ventricular Assist Device)?
An LVAD is a mechanical device that helps your heart pump blood.

Driveline
A cord that connects the
pump to the outside. This
passes through the skin
and holds important
Pump
electrical wires.
A motor placed inside the
chest. It pushes blood from
the heart to the body.

Batteries
A power source for the
pump. The pump must
Controller always be plugged into
A computer that either batteries or an
operates the pump. The electrical wall outlet.
controller displays
messages and sounds
alarms about the device.

LVADs are used for different reasons.

• Sometimes an LVAD helps treat people until they can get a heart transplant. This
is called “bridge to transplant” (or BTT).
• Other times, LVADs are used to treat people who have severe heart failure and
cannot get a transplant. This is called “destination therapy” (or DT). Those who
are DT will live with the LVAD for the rest of their lives until death.

For both BTT and DT, the surgery, types of device, and recovery are the same.

What is the process of getting an LVAD?

• Getting an LVAD requires open-heart surgery
• The surgery can be dangerous, and recovery can be long and hard
• Most patients stay in the hospital for a couple of weeks – some stay longer
• Patients and their caregivers need to attend education sessions to learn how to use the
device equipment

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What might my life look like with each OPTION?
The numbers below are from recent medical studies. However, no one can know what will
happen to any one person.

Life with an LVAD Life without an LVAD

How long might I live? How long might I live?
Patients usually live longer with an LVAD. Patients usually do not live as long without an
Slightly less than 9 out of 10 patients who LVAD or transplant.
got an LVAD are still alive after 1 year. 1-4
Among the sickest patients, less than 2 out of
10 who did not get an LVAD are still alive after 1
87% year.1

Alive Dead 17%

For less sick patients able to live at home, nearly

How might I feel? 7 out of 10 who did not get an LVAD are still
Of those patients who get through surgery, alive after 1 year. 5
many feel big improvements in heart failure
symptoms – less shortness of breath, less 68%
swelling, and more energy.1 Most patients say
they can do more. Alive Dead

Most patients are somewhere in between these two

numbers. Ask your doctor how sick you are.
What complication might occur?
1 year after surgery, about: 1-4 How might I feel?
• 5 to 6 patients out of 10 are readmitted to Nearly all patients without an LVAD or
the hospital transplant continue to have severe heart
55% failure. Symptoms, like anxiety and shortness
• 1 in 10 have a stroke of breath, may be helped with medicines.
10%
• 2 in 10 develop a device-related infection What might occur if I don’t get an
LVAD or transplant?
20%
Many patients will not be alive at 1 year.1,5
• 2 in 10 have a serious bleed that requires
medical attention • Patients will not have to be dependent
20% on a machine to live

• Nearly 2 in 10 have ongoing heart failure • Patients can often leave the hospital earlier
and spend their remaining time at home
17%
• Palliative care and hospice may be needed
sooner - see next page

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With or without an LVAD, there are services to help with your
SYMPTOMS and suffering.
What is palliative care?
Palliative care is medical care for people with
serious illnesses. It helps give relief from
symptoms, pain, and stress. It also provides
emotional and spiritual support. The goal of
palliative care is to improve quality of life for Patient Perspectives:
patients and their caregivers. Patients who got an LVAD

What is hospice? “It wasn't an easy choice for me to

Hospice care is for patients near the end of make. But then I started focusing on
their lives. It is given by doctors, nurses, and my life. On myself.”
other health professionals. This care includes
medical, emotional, and spiritual support, “I was willing to do anything they told
and helps to provide comfort and peace for me I had to do to feel better.”
patients. Hospice care usually occurs at a
patient’s home. It can also occur in other Patients who chose not
places, such as a nursing home. to get an LVAD or transplant

“I don't know if the pump would keep

Even with an LVAD, some patients will me alive. And even if it does, I'm not
continue to feel worse or get sicker due to sure it would be worth living. Because
other health problems. Near the end of life, I'm not going to claw and hold on to
patients will have the option of turning off the wall to stay alive.”
the pump. It can be difficult to know when
the right time for that is. It is important to “I’m tired of being in pain and suffering.
talk with your loved ones and doctors ahead I’m not scared of death.”
of time about your wishes for end of life.

Whether we like it or not,

everybody eventually dies.

However, you have some control

over how you will live the rest of
your life.
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If I get an LVAD, how will my life CHANGE?
There are many life-changing aspects of the LVAD. Some details may be different depending
on your hospital.

Power Source: You must be plugged into a power source at all times – loss of electrical
power to the pump can result in death. When you are sleeping, you will plug into an electrical
outlet. During the day you can switch over to batteries, which last up to 17 hours.

Carrying Equipment: Along with batteries, you will have to carry the controller. Equipment can
be carried in a vest or on a belt. Battery packs and equipment weigh about 3 to 7 pounds. Carrying
extra battery packs and an extra controller is also important, in case they need to be changed.

Driveline Care: The driveline site (where the electrical cord

exits the skin) must be cared for carefully. Bandages must
be changed and the site should be cleaned several times a
week. Lack of care could cause a deadly infection.

Medicine: With an LVAD, you will have to take blood

thinners for the rest of your life. You may need to continue
some medicine to help with your heart, but most patients
take less medicine after getting an LVAD. You also will have to
Driveline Site
go to the doctor’s office for check-ups.

Water Precautions: Due to the equipment and driveline site, you cannot go into water.
This means you can’t swim, bathe, or take regular showers. You can purchase special
water protection equipment in order to shower with your device.

Cost: Depending on your insurance coverage, you may have extra costs with your device.
Many patients have to pay for the driveline bandages. You may also have co-payments for
your medical care.

Sex: Some patients and their partners report a change in their sex life. However, for most
LVAD patients, sex is safe after recovery from surgery.

Emotions: The LVAD may cause emotional effects for both patients and caregivers. Some
people are very grateful for the LVAD and get used to these lifestyle changes. Others worry
often about their equipment failing or feel overwhelmed with taking care of the device. This
stress can lead to depression and anxiety. Seeking mental health care may be helpful.

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An LVAD is a major decision for CAREGIVERS, too.
Caring for a patient with severe heart failure often requires lifestyle changes. When a patient
gets an LVAD, the caregiver’s lifestyle can change even more. The caregiver’s responsibilities
are different for every patient and change over time.

Some LVAD caregivers feel happy that they can help their loved
one. However, some caregivers feel stressed with responsibilities,
finances, or the health of the patient.
Caregivers of patients who choose not to get an LVAD may
also experience the same feelings.
The LVAD caregiver helps with:
• Driveline site bandage changes and checking
for infection
• Battery care
• Equipment care
• Managing medicines Caregiver Perspectives:
• Arranging follow-up appointments Caregivers of patients with an LVAD
• Extra care during recovery, usually the first
couple months after surgery: “I am so thankful for the LVAD. You learn to
- Sponge bathing deal with those little things.”
- Cooking
- Running errands “I‘ve never regretted this decision. It’s just
that sometimes you get to the point where
- Driving the patient
you want to be at the house and not have
someone there that you need to constantly
take care of.”
Things to consider:
• Most hospital programs require LVAD patients Caregivers of patients without an
have a caregiver – some programs require a LVAD or transplant
caregiver for up to 3 months after hospital
discharge, while other programs may require a “My husband would have been through a lot
longer commitment more stress if he had the LVAD. He died the
• Caregivers must be committed to help the
way he wanted to. He died at home and he
patient every day – this usually lessens over time died very peacefully. He wasn’t in pain and
that’s brought a lot of peace to me.”
• The primary caregiver usually attends training
to learn how to operate the LVAD and care for “My worries after we made the decision
the patient to not get the LVAD were how much worse
• Some LVAD programs offer support for caregivers he was going to get and how long I would
- check with your local program to see what is be able to keep him at home and look
available for caregivers and families after him.”

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Take some time to CONSIDER what you have learned
about LVADs and think about how you want to live the
rest of your life.
On a Scale…
How do you want to live out the rest of your life? (check one box)
Do everything I can to Live with whatever time
live longer, even if I have left, without
that means having going through major
major surgery and surgery or being
being dependent on dependent on
a machine. a machine.

With an LVAD? Without an LVAD?

What do you hope for
with or without an
LVAD?
What frightens you
about living with or
without a LVAD?
What are your biggest questions…
…for your doctor, surgeon, or cardiologist?

…for your caregiver or family?

…for patients who currently have an LVAD?

https://patientdecisionaid.org | [email protected]
1. McIlvennan CK, Magid KH, Ambardekar AV, Thompson JS, Matlock DD, Allen LA. Clinical Outcomes
Following Continuous-Flow Left Ventricular Assist Device: A Systematic Review. Circ. Heart Fail. 2014;7(6):1003-13. Colorado Program for Patient
2. Mehra MR, Uriel N, Naka Y, et al. A fully magnetically levitated left ventricular assist device - final report. N Engl J Med. 2019;380(17):1618-1627.
3. McGee E Jr,Danter M, Struber M, et al. Evaluation of a lateral thoracotomy implant approach for a centrifugal-flow left ventricular assist device: The LATERAL clinical trial. J
Centered Decisions
Jeart Lung Transplant. 2019;38(4):344-351.
4. Kormos RL, Cowger J, Pagani FD, et al. The Society of Thoracic Surgeons Intermacs Database annual report: evolving indications, outcomes, and scientific partnerships. J
Heart Lung Transplant. 2019;38(2):114-126.
5. Yu S, Cevasco M, Sanchez J, et al. Considerations for Referral: What Happens to Patients after Being Turned Down for Left Ventricular Assist Device Therapy. J Card Fail.
2020;26(4):300-307

Copyright © 2020 by The Regents of the University of Colorado on behalf of its employees: Larry A. Allen, MD, MHS; Daniel D. Matlock, MD, MPH; Jocelyn S. Thompson, MA; Colleen K. McIlvennan, DNP,
ANP. This work was supported through a Patient-Centered Outcomes Research Institute (PCORI) Program Award (1310-06998), the National Heart, Lung, and Blood Institute (K23HL105896) and the
National Institutes on Aging (K23AG040696) of the National Institutes of Heatlth, and Universirty of Colorado Department of Medicine Early Career Scholars Program. Conflicts of Inerest: Allen - none; Matlock
- None; Mcllvennan - none; Thompson - none. Reading level: 6.0. Last update: 1/24/20. Contact: 303-724-4713 or [email protected] or [email protected] or colleen.mcilvennan@ucden-
ver.edu. Some rights reserved. No part of this publication may be used in any commerical development or effort without the express prior written permission of the publisher. No part of
this publication may be used in any derivative work without first obtaining permission from the publisher and providing acknowledgement thereof. University of Colorado hereby disclaims all
liability associated with the use or adoption of the information provided herein. User shall remain liable for any damages resulting from his reliance on this information. The content is solely the responsibility of
the authors and does not necessarily represent the official views of funding agencies (NIH, PCORI) or medical centers. The material provided on this infographic is intended for information purposes only and is
not provided as medical advice. Any individual should consult with his or her own physician before determining whether a left ventricular assist device is right for him or her. This pamphlet and the
associated video (at https://patientdecisionaid.org) are FREE FOR DISTRIBUTION. This work is licensed under a Creative Commons Attribution, Non-Commercial, No-Derivatives 4.0 International
License.