On death and dying: From hospital to hospice in heart failure

March 19, 2007

London, UK - Cardiologists don't like talking about death with their patients. But with the explosion in the number of people with heart failure, they are going to have to start getting used to it. Despite the recent multitude of advances in the field of heart failure and the common perception that it is a disease that patients can live with for a long time, heart failure is now more malignant than many cancers, and around half of all people diagnosed with heart failure will die within five years.

But cardiologists are often reluctant to discuss the possibility of a long illness culminating in death and the attendant decisions this will involve. One of the reasons for this is that the course of heart failure is notoriously difficult to predict, so it is hard to give an individual patient a definitive prognosis. Another factor is that while cardiologists are used to dealing with sudden death, they are not comfortable discussing the process of dying. But increasingly it is being recognized that doctors must begin to level with heart-failure patients, giving them a rundown of what to expect and outlining the decisions they will have to make in the future.

And there are a lot of things to think about. Patients need to decide what kind of care and treatment they want at the end of life and to think about advance directives, so-called "living wills," detailing, for example, what they want to do with any implanted devices as they are nearing the end and how they want the devices disposed of after death.

Also, heart-failure patients are increasingly requiring hospice care, a mode of treatment that until recently has catered almost exclusively to cancer patients. This in turn highlights other shortcomings: palliative-care physicians and hospice staff who have no training in heart failure and are afraid to care for such patients; and cardiologists who are reluctant to refer their patients to hospice because they fear employees there will stop all medications. In addition, the costs of palliative care need to be considered, and a proper assessment needs to be conducted that looks at expenses while taking into account clinical outcomes.

Fortunately, there are dedicated groups of people working both in cardiology and palliative care trying to identify where the problems lie and improve the situation for all concerned.

Difficult conversations and when to have them

Dr Sarah Goodlin

Geriatrician and palliative-care physician Dr Sarah Goodlin (Patient-Centered Education and Research, Salt Lake City, UT), who formed the Palliative Care-Heart Failure Education and Research Trials Collaborative (PC-HEART) in the US in 2003, explains: "Heart failure has now moved from a serious acute illness to a chronic disease, and suddenly doctors are faced with managing people over time."

As sudden death is a constant possibility in heart failure, and patients need to be informed about this, Goodlin believes this offers an ideal opportunity to introduce the concept of death at some stage. "The important conversation about defibrillators, what to do in an emergency, and how to manage sudden cardiac death can go hand-in-hand with the conversation about a slower death later on," she says.

Cardiologists are not good at this. We wait until it's too late to have these kinds of discussions.

Dr Paul Hauptman (Heart Failure and Transplant Program, St Louis University Hospital, MO), who together with Goodlin and others has authored a consensus statement on palliative and supportive care in advanced heart failure [1], says the big debate is about when to have this "difficult conversation. We don't want to have it too early, but also not too late."

Dr William T Abraham

Dr William T Abraham (director, division of cardiovascular medicine, Ohio State University, Columbus) says: "We need to stress, on the positive side, that heart failure is a manageable chronic disease and is associated with a reasonable lifespan. But the bad news is that we don't have a cure. We want patients to be hopeful but also to understand that this is a progressive disease that will eventually advance to end stage. In general, cardiologists are not good at this. We wait until it's too late to have these kind of discussions."

Goodlin agrees: "Nobody likes to talk about death and dying and give people bad news. But oncologists have made a concerted effort to learn how to have these difficult conversations, and this is something that cardiology has not addressed."

One of the reasons for this is that cardiologists—in contrast to cancer doctors—do not receive much training on how to deal with dying, says Hauptman. "Medical students do a short course in their second year entitled 'on death and dying,' and they might have a brief exposure to palliative care, but the model remains almost entirely oncologic," he notes. "Our work tells us that these conversations are not conducted properly."

Dr Barry K Rayburn (University of Birmingham, AL) agrees: "I think that most of us have had that experience many times where a patient or family member has been utterly shocked and dumbfounded by something we were pretty sure we had talked about just last week."

He says research suggests the way in which doctors discuss bad news affects the patients' ability to comprehend that information. "Perhaps as much as anything else we do, having the conversations dealing with the end of life is one of the most humanistic things we do in medicine. So learning how to do this right is important."

But this will be no easy road in cardiology, he says. "These conversations burden us with responsibility, cause anxiety, and give us a sense of failure. There's almost a sense of 'Well, I don't have anything to offer in this room, but next door I can help.' "

Goodlin is endeavoring to improve the situation: "We're trying to teach people how to have these discussions. We believe in having the conversation early. The focus is not death, but you have to help people to understand that this is a disease you can die from. It's then much easier to go back to it at a later date. It's much more difficult if you have to introduce the concept of death later on."

What do patients want?

Dr Steve Pantilat

Another complicating factor is that each patient is different in terms of how much they want to know, says Dr Steve Pantilat, who is the director of the Palliative Care Program at University of California, San Francisco. "Some want to know all the details, and some don't."

Rayburn agrees, saying that patients often fall into two extreme camps: "Even in the 21st century, you will encounter those who want you to make all the decisions and vice versa—those who are determined that every single decision is going to be theirs."

Abraham says he finds that patients generally want the truth. "In my experience, they want to hear it straight. In my referral centers, it often surprises me that this is the first time patients have had the conversation [about dying], and they usually express gratitude."

The focus is not death, but you have to help people to understand that this is a disease you can die from.

Hauptman has developed a subtle way of approaching the issue. "I ask them if they have their affairs in order. Some of them look at me like I'm crazy, but most people eventually get it." He relates a recent experience. "When I asked this guy, he turned to me and said, 'We've got it all set up. I've already bought my tombstone.' That patient was ready."

The little research that has been done shows that most heart-failure patients want someone to make sure their wishes are fulfilled. They want tailored pain control and emotional and spiritual support. They want to be able to be cared for and die in their own homes or a family member's, if possible, or to receive hospice care, if appropriate.

When I asked this guy, he said, 'I've already bought my tombstone.' That patient was ready.

One of the complicating factors is the sheer unpredictability of the disease. Because the array of treatment options is particularly broad and includes a number of technologically invasive therapies, there is frequently "one more thing to try." And although there are a couple of prognostication models for heart failure that have been validated[2,3], these remain largely academic tools.

Dr Barry K Rayburn

However, a number of doctors are using a diagram depicting the disease trajectory—or so-called "roller-coaster ride" of heart failure—and showing it to patients to try to illustrate to them how fickle the disease is. "They like the idea that they are going to get better and plateau, but I stress to them that the timeline is unpredictable," says Rayburn.

Goodlin concurs. "It's a pretty rocky course. Heart-failure patients do suffer exacerbations and then get better. There is a lot of variability in their clinical status even as they approach the end of life."

Cardiologists are afraid of hospice care

Cardiologists often use this lack of predictability in heart failure as a reason not to broach the subject of dying or think about hospice care, but this excuse does not cut any ice with palliative-care physicians.

"Because the model in cancer is that patients get referred to hospice and then their chemotherapy is stopped, cardiologists are often afraid of referring their patients," says Pantilat. "They fear that hospice staff will stop all medications and tell their patients they are going to die, and they don't like that. I can see why."

Dr Miriam Johnson (Hull York Medical School and St Catherine's Hospice, Scarborough, UK), a British clinician who together with local cardiologists is pioneering a joint approach to palliative care for heart-failure patients[4], had a similar experience. "At first, the cardiologists feared that our staff would cross off all the important heart-failure medications, but later they realized that their fears were unfounded."

Developed in the consensus conference on Palliative and Supportive Care in Advanced Heart Failure, by Dale Renlund, MD, and Sarah Goodlin, MD. [Click here for a larger view.]

In fact, the idea that people go into hospices never to come out again is somewhat misguided. Nearly half of all people admitted to hospice return home again. Day care is also another vital component of hospice care, and home support is also becoming increasingly important, whereby care teams support patients in their own homes.

Abraham, who moonlighted at a hospice during his medical residency, says about 90% of hospice care in the US is now home-based: "In general, my preference is to have the patient in his or her own home, and it usually works very well. But there are circumstances in which in-patient care is better—for example, in the case of a very elderly patient, where perhaps the spouse is elderly and infirm, too, and it's just impossible for the patient to remain at home."

Hospices underused in heart failure; staff needs relevant training

Cardiologists are often afraid . . . that hospice staff will stop all medications and tell their patients they are going to die, and they don't like that.

However, Pantilat, Johnson, and Goodlin admit that there is wide variability in the type of care hospices can offer heart-failure patients, depending on where they are and how they are administered, and that the situation is often confused by the lack of advice on timing the transition to hospice care.

For example, AHA/ACC guidelines recommend hospice care as an option for patients with refractory symptoms of heart failure at rest despite optimal therapy and who are predicted to have less than a one-year survival[5]. Yet referral to hospice care in the US requires a patient's attending physician and the hospice director to document that the patient likely has less than six months to live.

And while the AHA/ACC guidelines and similar recommendations from the Heart Failure Society of America state that hospice care be considered in advanced heart failure, there are no specific guidelines for hospice care of heart-failure patients.

"Some hospices have expertise in heart failure, others have none. Some will provide expensive or labor-intensive services for heart failure, while others won't even consider it," says Goodlin, who is the lead author of a recent survey of US hospice directors about heart failure[6]. This survey found that currently only about 10% of hospice patients have a primary diagnosis of heart failure, but Goodlin believes this figure should be much higher.

"One of the things we have identified is that many hospice-care clinicians don't know how to manage heart failure, but we are working on developing educational materials for them," she notes. "Also, often at the time of referral, very little information is being provided to them about the patient's heart-failure evaluation and prior management."

Dr Miriam Johnson

Johnson says progress can be made; it is just a matter of working together. "We approached this in a sensible fashion. Our hospice staff learned on the job, using the expertise of the local cardiology teams. And the heart-failure nurses were absolutely key in bridging the gap between cardiology and palliative care," she notes.

"The concept that you can refer to hospice care only when every other avenue is exhausted is simply not true," Johnson continues. "Now our cardiologists refer patients for transplants and at the same time they refer them to me. At the start, I called the cardiologists all the time. Now I've gotten good at tweaking the diuretics, but I still couldn't do without them. We are hand in hand with the cardiologists, it's a mutual exchange of skills."

Palliative care: What's best?

Much work remains to be done by heart-failure doctors, nurses, and hospice staff to develop comprehensive care plans for palliation. Hauptman, together with Dr Edward P Havranek (Denver Health Medical Center, CO) has developed an algorithm proposing the integration of a palliative-care approach early in the course of heart-failure treatment and a tiered process for selecting patients for hospice care[7].

All concerned acknowledge that additional clinical-trial data are needed to help determine best practice for a number of common symptoms in people with end-stage heart failure[8].

"Heart-failure patients have a lot of pain, including dyspnea, and a lot of fatigue, and we don't really know why or how to treat these symptoms," Pantilat says. "We don't give NSAIDs for pain, in case they exacerbate heart failure. And we are not sure whether opioids are the right thing to use."

Johnson is running a pilot program on the use of opiates in heart failure. And Abraham believes opiates "are particularly useful in end-stage heart failure, they work well to ease the sense of breathlessness that many heart-failure patients experience. The goal is not to heavily sedate them but just to take the edge off their discomfort, to the extent that they can still interact with friends and family."

Fatigue is more of a challenge, says Abraham. "Inotropes help," he says, adding that one of the misconceptions from the hospice community is that inotropes are helping patients to live longer. "In fact, this is not true, but they do make patients feel better." Pantilat concurs: "We say to patients, it may kill you, but it makes you feel better."

We say to patients, [inotropes] may kill you, but they make you feel better.

Other problems encountered during end-stage heart failure include sleep-disordered breathing, for which there is some evidence that continuous-positive-airway-pressure (CPAP) treatment is useful, and depression. More work is needed on the treatment of depression in heart failure, says Goodlin.

"And drugs such as ACE inhibitors, beta blockers, and spironolactone are palliative as well, it's just that no one thinks of them in that way," Pantilat notes, adding: "Patients with heart failure should be taking their medications until they can no longer swallow."

Cost considerations and the future

Another important issue is cost. Currently, in the US, the range of reimbursement structures for services and criteria for reimbursement complicate and fragment care for advanced heart failure, say the experts.

Goodlin says that while hospice care will not necessarily be cheaper for end-stage patients—in fact it can prove more expensive—the cost of palliative care desperately needs to be evaluated properly in a prospective trial.

"We need to formally track the costs of care to the healthcare system and to individuals and their families. But cost must be assessed as just one of the outcomes in heart-failure care. For example, it's possible to give inexpensive care that is bad care. It's very important that this kind of study be done prospectively and that we understand what kind of care is delivered for a given cost," she notes.

Hauptman told heartwire that his group is looking at costs related to hospitalizations for heart failure, but as yet they have no data to report.

We need to formally track the costs of care . . . [but] it's very important that we understand what kind of care is delivered for a given cost.

Goodlin says that PC-HEART is hoping that the National Heart, Lung, and Blood Institute (NHLBI) will provide resources for education and palliative care in advanced heart failure, given that the National Cancer Institute provides a similar grant mechanism for those working in cancer care.

In the UK, Johnson says there are some central initiatives afoot to try to improve the situation nationally. These include the National Institute for Clinical Excellence (NICE) guidance for heart failure, which recognizes the importance of a palliative approach and access to palliative-care specialists when needed.

She sums up the situation: "On the ground, there is a greater awareness of the needs of heart-failure patients, but as resources are scarce, progress is slow."

How to have that "difficult" conversation
At the AHA meeting in Chicago last November, Rayburn gave a talk to meeting attendees about how to have "difficult" conversations with heart-failure patients regarding the end of life.

"The key is to know what you are going to say before you go into the room. Go over the conversation in your head, and develop a plan of where to go from here, a next step," says Rayburn.

"What are the goals when we have difficult conversations with patients? I think it's worthwhile to think these things through in specific terms before you set out to have the conversation with the patient and their family."

He stresses that there should be a number of goals in such a discussion:

  • Conveying factual information to the patient and caregiver.

  • Answering their questions.

  • Providing support.

  • Beginning to develop a plan for ongoing therapy.

  • Maintaining a productive, professional relationship.

"The level of hopefulness you give a patient is pretty self-explanatory," he notes. "The way that this is presented can either completely take away hope or it can leave residual hope, sometimes appropriately, sometimes not. And I think that's an issue that has to be thought through carefully."

Later on, if the situation deteriorates, the fact that the physician had the earlier conversation makes things so much simpler, he says. If treatment is not going well, it's easier to say, "We need to develop a plan of where to go from here if we continue to have no luck, even if it's that we are going to work on palliation."


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