Hospices need to adjust some practices to better serve heart failure patients

Palliative care serves as bridge to hospice

Many patients die of heart failure, but they need not die without hospice services, heart failure experts say. Caring for heart failure patients creates both a challenge and an opportunity for hospices, since heart disease accounts for 30 percent of all deaths, says Sharol Herr, BSN, MSEd, RN, CHPN, palliative care nurse clinician and educator at Mount Carmel Health System Palliative Care of Columbus, OH.

"Hospice professionals are the experts in managing symptoms that come about with heart failure," Herr says. "And hospices also have the multidisciplinary team that helps patients and families deal with psychosocial and emotional and spiritual issues that go along with the heart disease process."

The core components of hospice care could provide a positive impact to the heart failure patient population, Herr adds.

But the challenges to increasing heart failure patient referrals to hospice are significant, which is why many programs are emphasizing palliative care as a bridge to hospice care, experts say.

"The palliative medicine people will tell you they believe palliative care begins at the moment of diagnosis," says Paul J. Hauptman, MD, professor of internal medicine at Saint Louis University School of Medicine in St. Louis, MO.

Unfortunately, that's now how most health care professionals practice, Hauptman notes.

Medical professionals need to monitor how patients are progressing with the disease and have serious discussions about goals of care with patients and their families, Hauptman adds.

"Only at the very tail end does hospice come into play, and that's in the terminal stages," Hauptman says. "The biggest problem people have is that unlike oncology and oncological diseases, predicting when the end will occur is not that easy."

"Heart failure is such a prevalent disease in this country that if a hospice is not entering into this work then they are not managing a huge segment of the population's needs," says Mary Ann Gill, RN, MA, executive director of palliative care services at Mount Carmel Health System in Columbus, OH.

"Sixty percent of all heart disease cases we see in palliative care programs is heart failure," Gill adds.

Heart failure is the term now accepted to describe the disease, which had been called congestive heart failure, Gill notes.

"We have a hospice that is part of our overarching palliative care program at this health system," Gill says. "And one way we can help one another is if we understand what the research is telling us."

Half of the people who die of heart failure die of a sudden death, and the other half have a slow trajectory toward death, Gill says.

"So you need to prepare your team and resources and response rate to those two potential eventualities," she adds.

Historically, the barrier to having cardiac patients in hospice care is that hospice professionals have had difficulty with the cardiac patient's progression from interventions to palliative care, Herr notes.

For example, hospices tend to shy away from providing cardiac medications along with palliative care medications to heart failure patients, Herr says.

"Hospices tend to make it an all or nothing situation, but there's a much more gray area and transitional area that a hospice can be a part of," Herr adds.

A chart review of a hospice and a literature search of heart failure patients in hospice care showed that more than one-third of these patients were admitted to hospice during their last week of life, says Cheryl Hoyt Zambroski, PhD, RN, an assistant professor in the school of nursing at the University of Louisville in Louisville, KY.

One of the reasons why heart failure patients often are referred to hospice so late in their disease is because these patients may tend to have a greater preference for resuscitation than do cancer patients, Zambroski says.

"We don't have a good idea about what is the end-stage heart failure," Zambroski says.

Also, heart failure patients may need active treatment, including pacemakers and other devices and medications that are considered curative, but also could be used to improve the quality of their lives, Zambroski says.

Hospice patients often have a perception that when they go from cardiologist care to hospice care, essentially all the cardiac medications will be stripped from them, Zambroski says.

"I think the perception can make physicians reluctant to refer heart failure patients to hospice care," Zambroski adds.

For example, hospices sometimes are reluctant to offer heart failure patients inotropic medications because of cost concerns since the hospice's per diem reimbursement would have to cover the cost of the drugs, Hauptman says.

"But inotropic drugs can be a very important part of controlling the heart patient's symptoms," Hauptman says.

When Hauptman has referred a heart failure patient to hospice care and prescribed inotropic drugs for the patient, the hospices have objected, saying that inotropic drugs are for acute treatment of heart failure, he notes.

"But we say, 'Yes, in some cases, but in many cases the patient feels better,'" Hauptman says.

Hospices can provide a tremendous financial benefit, as well as convenience, to their heart failure patients by covering the heart medications, Herr notes.

It will help keep the patients stable because they will receive follow-up by hospice staff on a predictable basis, Herr says.

"Many times patients prior to hospice care have not been stable, but they end up becoming stable because of that oversight," Herr adds.

Sometimes a heart failure patient's poor compliance with medications is the result of an inability to pay for the drugs, Herr notes.

"Hospice can play a role in terms of helping to coordinate or monitor the availability and appropriate use of medication," Herr says.

Hospice staff also might learn how to better understand a heart failure patient's prognosis by watching the patient's weight and abdominal girth, which may provide clues about kidney function, Gill says.

Also, water retention may negatively impact quality of life, so the hospice and palliative care approach might be to help the patient reduce water retention through a low salt diet, for instance, in order to improve the patient's comfort, Gill says.

"Our message is that you can't be cavalier in the hospice environment about things that appear to be about disease management, because they might also impact a patient's comfort," Gill adds.

Clinicians often find that heart failure patients' progression is unpredictable, Gill says.

"They can look very stable and sometimes die very unexpectedly," Gill explains. "Others can look like they're at the end of their life and continue to live with a little stable management."

Another problem with referring heart failure patients to hospice care is that too few hospitals have palliative care services, which could serve as a bridge to hospice services, Hauptman says.

At a recent conference with cardiac physicians, Hauptman asked informally how many people worked at hospitals with palliative care services, and only about 30 percent answered "yes."

"It's important to have access to a palliative care team," Hauptman says.

The future of care for heart failure patients likely involves bringing a palliative care approach to the acute care setting, Zambroski says.

"I think people are going to be really open to the palliative care approach in that we can deliver excellent and outstanding symptom management, palliative and multidisciplinary care, and all those things outside the hospice label," Zambroski says.

The idea is to use the multidisciplinary approach that has been lacking in the acute care setting, she adds.

"The problem is: Who is going to pay for it? This is not an era when you can have services provided when there's little if any reimbursement," Hauptman says.

One solution to increasing earlier hospice referrals of heart failure patients is for more research to be done on the best practices for patients with end-stage heart failure, Hauptman says.

The default best practice is to use the oncological model, which involves morphine and other narcotics and which focuses on pain management, Hauptman says.

The problem is that the oncological model doesn't focus much on dyspnea, he says.

"There's not enough information available for understanding how heart patients actually die," Hauptman says. "If we knew better the mode of death, we could focus our treatments better."

Also, hospice physicians need more education on how patients with heart failure die, Hauptman says.

Need More Information?

  • Mary Ann Gill, RN, MA, Executive Director of Palliative Care Services, Mount Carmel Health System, 1144 Dublin Road, Columbus, OH 43215. Email: mgill@mchs.com.
  • Paul J. Hauptman, MD, Professor, Internal Medicine, Saint Louis University School of Medicine, St. Louis, MO 63110.
  • Sharol Herr, BSN, MSEd, RN, CHPN, Palliative Care Nurse Clinician and Educator, Mount Carmel Health System Palliative Care, 1144 Dublin Road, Columbus, OH 43215. Email: sherr@mchs.com.
  • Cheryl Hoyt Zambroski, PhD, RN, Assistant Professor, School of Nursing, University of Louisville, Louisville, KY 40292. Telephone: (502) 852-8388. Email: Cahoyt01@louisville.edu.