Preparing for Advanced Heart Failure (Part Four)
Heart failure is normally progressive. In its early stages, heart failure (HF) can often be managed with medication and a healthy lifestyle. The condition is considered advanced when conventional heart therapies and symptom management strategies no longer work. You feel shortness of breath and other symptoms even at rest.
As the disease progresses and the heart becomes weaker, treatment gets more complex. Advanced heart failure can’t be cured, but it can be treated. Treatments can reduce symptoms and help the heart pump as best it can.
There is a growing selection of therapies and state-of-the-art technologies for advanced heart failure (for more detail about these treatments visit heart.org):
- Several types of open-heart surgeries
- Nonsurgical procedures (percutaneous interventions)
- Implantable cardioverter defibrillator (ICD)
- Short-term treatments to assist with recovery from a reversible condition or transition to permanent therapy
- Implantable left ventricular assist device (LVAD)
- Heart transplant
- Artificial heart
But with more therapies to choose from, there is more to be considered. These advanced treatments span a wide spectrum and can be complicated and confusing.
This is the time to have difficult, yet important, conversations with your family and doctor about the care you want to receive. With benefits come risks that must be weighed, and possibly decisions around quantity versus quality of life. It’s usually helpful for treatment options to be addressed through a systematic and comprehensive process.
Dr. Larry Allen
This process is called shared decision making. It involves doctors working with patients to ensure that the patient’s values, goals and preferences inform their care as their condition worsens. “I have heard shared decision making referred to as ‘a meeting between two experts,’ where the two experts are the patient and the clinician,” said Larry Allen, associate professor of medicine and Director of Heart Failure at the University of Colorado Hospital. “Each brings his or her own perspective, knowledge and experience to the conversation.” Doctors understand the medical details and have some experience with what might happen with various decisions.
On the other hand, patients bring their personal experiences, which influence their goals, values and preferences for how they want to move forward. “A good decision can only happen when patients and clinicians work together to make the correct decision for that particular patient,” said Allen, who is the lead author of an American Heart Association Scientific Statement on shared decision making in advanced heart failure.
For many conditions, medical decisions are clear-cut — an infected appendix has to be removed, a smoker with heart disease should stop smoking. But whether an advanced HF patient should get an artificial heart or a left ventricular assist device (LVAD) or a heart transplant is less clear. “Certainly these therapies can support HF patients and potentially help them live longer, but there are also a lot of risks and burdens,” Allen said. And some of the burden of potential complications associated with surgery — and debility after surgery — is often shouldered by family caregivers.
A heart transplant, for instance, may seem like a new beginning to a patient, but the doctor knows that it is also trading one set of symptoms and complications for another. For example, a transplant may increase survival and improve quality of life, but there is also the possibility of the body rejecting the new heart and increased risk of infection.
Surgery always involves risk, and people can end up in the hospital with complications. In addition to these risks and caregiver burden, the cost of the treatment is something to think about. In some cases, the unpredictability of living with a device like an implantable cardioverter defibrillator (ICD) that delivers electrical shocks to the heart when it detects a dangerous rhythm must be considered.
These considerations make it more difficult to weigh the risks and benefits. “Shared decision making would ask that we have a conversation about whether this is a good therapy for an individual patient,” Allen said. “That really depends on their values, goals and preferences.”
Some people with HF are at risk of sudden cardiac arrest (SCA), for which the treatment is an ICD placed in their chest. The ICD’s job is to shock the heart should it go into a dangerous rhythm. “It has been shown that ICDs can help people with HF to live longer,” Allen said.
But what if the patient is 85 with numerous complicating conditions, like uncontrolled diabetes or kidney disease requiring dialysis or emphysema as a result of smoking for years?
An ICD treats one possible consequence of advanced HF, but it doesn’t make the HF any better, nor the diabetes or emphysema. “The ICD may keep the patient from exiting this world suddenly,” Allen said. “But it may also take away the opportunity to die in their sleep and actually makes it more likely that they’ll die in the hospital as their symptoms continue to worsen. Perhaps for that patient the thought of dying suddenly is not so terrible.”
Should the patient have the device implanted? Often this decision comes down to quantity of life versus quality of life because the treatment that may prolong a person’s life may also have serious consequences for the quality of that life. It’s a decision that ultimately only the patient can make. But doctors clearly have a role in helping patients evaluate their situation and fully understand all of the risks and benefits of treatments and alternatives.
What makes life worth living?
The journey through HF is fraught with emotions for patients and their families, and those emotions come to the fore as decisions have to be made. How does a patient come to clarity?
Dr. Jean Kutner
Jean Kutner, M.D., professor of medicine at the University of Colorado School of Medicine, suggests that patients benefit from thinking about what’s important to them long before they have a conversation with their doctor. Your doctor has pertinent clinical information, but only the patient knows what he or she values.
Before you get to the quality vs. quantity question, there is a vital question — what makes life worth living? That is very individual and spans a spectrum. “It’s very common for patients to say, ‘I’m not worried about my own suffering. I’m worried about my family, my loved ones, all those I’ll leave behind,’” Kutner said. “As long as they know their family is okay, they’re okay with dying. Others say ‘I’m willing to go through just about anything to get to a certain event,’ maybe a graduation or a wedding or birth of a grandchild. I’ve heard people say that quality of life ‘is being able to eat what I want and enjoy time with family. And if I’m not able to do that, then it wouldn’t be worth it to me if I go through a particular therapy.’”
Kutner advises patients to step back and really think about what gives them meaning day-to-day. This is especially important when people are evaluating different therapies — what is day-to-day life going to be like with each therapy.
Starting the conversation: The family
It’s unrealistic to think that family members are not going to get involved in these kinds of decisions. Kutner says families most often come into conflict when there hasn’t been a discussion about these issues beforehand. “One of the hardest situations for everybody is if the patient is not able to speak for themselves,” Kutner said. “Then the family is put into the position of decision maker for the patient, and if they have not discussed the patient’s goals and values and what they would and would not want under what circumstances, it leaves the family making sometimes life or death decisions without being fully informed. Have these discussions early on and often to alleviate that burden on your family, so they can truly say, ‘I know this is what my loved one would want because we talked about it.’”
Like Allen, Kutner emphasizes the importance of appointing someone to be your medical power of attorney. She suggests choosing that person after you’ve told them what you want and gotten their agreement. “I always tell my patients to have the discussion first, then do the paperwork. Don’t just appoint somebody — like your oldest child — who you haven’t talked with,” she said. Of course, starting this conversation can be awkward and there are aids available. (See Decision Aids below.)
It is most effective to address these questions earlier rather than later, and then share your thoughts with the person you identify as your decision maker AND with your doctor. People often worry that it’s a burden on their family to talk about these things, and that it weighs especially heavy on the decision maker. “Sharing this is really a gift to your family because then they know that they’re doing what you want,” Kutner said.
Starting the conversation: The healthcare team
Given the complexity of the medical options, patients or family members may feel confused as the patient’s condition declines; their questions can initiate a discussion. However, the conversation really needs to start before the HF becomes advanced, and doctors and nurses are in a position to initiate it.
Anyone who has had a medical procedure is familiar with the concept of informed consent where the patient signs a document stating he or she understands what is going to happen, its risks and benefits as well as the alternatives. But informed consent is only the first step in the shared decision making process. Step 2 is asking for and exploring a patient’s preferences around those options. “And then, the third phase is really to deliberate with the patient about what seems to be the best option,” Allen said.
So how can you make that happen? One way is to make this discussion a part of an annual review of a patient’s situation before the HF becomes advanced. There are decision aids specifically developed to help patients begin to consider the issues involved, what their values are and what their preferences are. (See Decision Aids below.)
Optimally these issues and the patient’s preferences should have been discussed long before the HF has become advanced. With the healthcare team, ideally they would occur both routinely (at checkups) and at milestones that indicate that things are getting worse. The day of a hospital admission is a time to review and update advanced care decisions, not consider them for the first time.
Once the clinical course has become apparent during hospitalization, Allen suggests that doctors can take advantage of the time with the patient and family to further address complex medical decisions on the horizon. HF can be an unpredictable disease which means that the most carefully considered plans are continuously recalibrated based on how the person is feeling and responding to their therapies. “For patients and their families, it can be helpful for people to think about, ‘Okay, I’m making a decision that will affect these next steps and then we’re going to revisit that decision when X, Y, or Z happens,’” Kutner said.
When survival or quality of life is limited, time in the hospital provides better access to multidisciplinary teams as well as palliative care and other resources that can then be used outside the hospital. All of these considerations underscore the importance of a proactive, anticipatory and step-by-step approach to the patient coming to a decision.
Barriers to shared decision making
Right now the medical care system is not set up to pay doctors for helping patients make the right choice through shared decision making. “I think we’re seeing payment reform move a little bit in that direction,” Allen said.
As we’ve mentioned, in an ideal world, patients would have this conversation long before it was necessary, but this is not an ideal world. Sometimes patients are not emotionally ready to have such a discussion — “There may be a lot of pain, or they may fear dying and are just not emotionally ready to have a conversation about complex medical issues,” Allen said. Other times they may have suffered cognitive decline as a result of other conditions that prevents them from thinking clearly. As a result, it may be necessary for family members or other loved ones, who may have their own agendas, to talk with the doctors about the patient’s preferences. “This is why living wills are so important, to identify ahead of time someone you trust to represent you,” Allen said.
Cultural and religious differences can also present barriers to having this conversation as can a lack of medical knowledge that may make it difficult for patients to understand the problem and the possible medical treatments.
The doctor’s advice
HF is both chronic and progressive and its treatment can be complicated. “I would encourage patients and families to be engaged,” Allen said. “The patients and families that do the best are the ones that take it on, where they want to know about their diseases and their options. They’re not afraid to ask questions and evaluate the alternatives. They think through the options that are available. HF requires a lot of work by patients to engage in therapies. Having patients engaged and feeling a part of the process is good for them in the long run.”
Conversations about complex treatment and end-of-life issues are never easy and often so awkward that they are never started. And yet family members are relieved when they know what the patient wants as his or her condition declines. Here are some aids that may help facilitate these conversations:
- The American Heart Association has a general HF question sheet.
- The University of Colorado sponsors a website that discusses various treatment options like LVAD and ICD.
- The Ottawa Hospital Research Institute has developed an extensive website that makes available a wide variety of decision aids for many different conditions and treatments.
- The Conversation Project has a Starter Kit to help families talk about a patient’s wishes for end-of-life care. The kit outlines a four-stage process including questions the patient needs to address first as well as questions for the family to address and next steps to take.
- Aging with Dignity has developed a simple questionnaire called “Five Wishes” to help clarify a patient’s thinking about end-of-life issues.
Allen suggests that palliative care providers are well placed to discuss these complex care options when the situation is charged with emotion and the stakes are high, as when evaluating challenging or invasive treatments like a left ventricular assist device. “It can be very helpful to have people trained specifically in end-of-life care, symptom control and quality of life, as well as how to conduct these kinds of conversations,” Allen said. “I frequently work with our palliative care team to help us.”
People are often willing to sacrifice survival in exchange for symptom relief, a trade-off that varies among patients and may change for patients as their condition changes. A full discussion of what can be expected should include not only the risks of death but also the potential burdens of worsening symptoms, limited functional capacity, loss of independence, reduced social functioning and decreased quality of life as well as increased caregiver commitment.
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