Executive Summary

Hospitals are challenged to meet patients’ palliative care needs despite a scarcity of specialists, lack of training, and persistent misconceptions held by patients and clinicians. According to experts, bioethicists can:

• Encourage palliative care integration in the early stages of a life-limiting chronic disease.

• Provide palliative care education during lectures and grand rounds.

• Use individual case consults to educate clinicians on the benefits of early palliative care involvement.

 

Approximately 90% of patient deaths occur after a period of life-limiting chronic illness, notes Gerard Magill, PhD, Gallagher Chair at Duquesne University’s Center for Healthcare Ethics in Pittsburgh. As a chronic illness progresses, the patient’s capacity to benefit from curative treatments decreases. “Yet, diagnostic tests and treatments typically increase as the patient’s chronic illness progresses, often aligned with burdensome side effects,” says Magill.

This all too frequent scenario highlights the need to avoid futile treatments that offer no effective therapy and can cause harm and suffering for the patient, says Magill. “Instead, there needs to be a better alignment of treatment with palliative care,” he says.

Since the supply of palliative care and hospice specialists is too small to meet the needs of all patients with seriously advanced illness, many patients must rely on other clinicians to do so; clinicians, however, often lack training and experience. All clinicians, regardless of specialty, “should be competent in basic palliative care, including communication skills, interprofessional collaboration, and symptom management,” according to the 2014 Institute of Medicine Report, Dying in America. “Clinicians need to learn as much as they can about the resources and outcomes of palliative care as evidence-based healthcare that establishes a standard of professional practice,” says Magill.

Integration from the start

Traditionally, palliative care began only after treatment ended. “The emerging model is to initiate both treatment and palliative care together when a life-limiting chronic disease is diagnosed,” says Magill. As treatment becomes less effective and is either withdrawn or not initiated to avoid futile interventions, palliative care measures increase.

“Because the integration of treatment and palliation can have significant implications for sound stewardship of hospital resources, hospital administration should be willing to fund training opportunities,” adds Magill. Research suggests that significant costs are saved by avoiding futile treatments.1

Magill says bioethicists can promote palliative care at their institutions with these practices:

• Encouraging the integration of palliative care from the start of treatments for a life-limiting chronic disease.

• Providing lectures and ethics grand rounds on protection from unwanted treatment versus demanding futile treatment, or connecting futility with ethical principles of patient autonomy, beneficence, nonmaleficence, and justice.

• Emphasizing that avoiding futile treatment is completely different from rationing.

“Futile treatment involves no benefit to the patient. In contrast, rationing involves a benefit that is not provided,” Magill says.

Consults present an opportunity

Bioethicists routinely promote palliative care in a general sense, simply by virtue of the fact that their role is to support various aspects of the clinician/patient relationship that are essential to good care, says David Barnard, PhD, JD, Miles J. Edwards Chair in Professionalism and Comfort Care at Oregon Health & Science University in Portland.

“Bioethicists frequently reassure clinicians that there is a general ethical consensus that patients should have a clear understanding regarding illness and prognosis, and that there are choices patients can make regarding withholding or withdrawing treatments that are not consistent with their values and preferences,” he notes.

Also consistent with palliative care is bioethicists’ emphasis on respecting patient’s individuality and autonomy. “Those certainly underlie good palliative care,” says Barnard. “But bioethicists are by no means the only people who can spread those messages.” A growing number of institutions now have highly skilled palliative care physicians and nurses who can act as resources to clinicians, both generally and during individual case consults.

“The bulk of ethics consultations in most hospitals are around end-of-life decision-making,” notes Barnard. “That becomes an avenue for the bioethics person to have influence on future cases.” In addition to resolving the immediate clinical ethics problem, bioethicists can take advantage of a teaching opportunity, he says.

“The ethics person is often called in when things have gone badly — when there is the perception of an impasse,” says Barnard. Once the issue that led to the consult is resolved, bioethicists can bring the “big picture” to the clinical team’s attention. “You can use that as a kind of preventive ethics, by saying, ‘We might be able to reduce the number of times we get into this pickle if we think proactively about what kind of advance care planning could have gone on further upstream,’” says Barnard.

Bioethicists can conduct the consult in a way that provides education for clinicians, or can later use the consult as a springboard for further discussion. “Sometimes we get a little hung up on the dramatic moments — are we going to turn off the respirator or stop dialysis?” says Barnard. Once these immediate questions are resolved, addressing the underlying issues could result in fewer similar consults. “Once we get through the heat of battle, we might point out we have had a pattern of cases that seem to be difficult for the team,” says Barnard.

Persistent misconceptions

There is a persistent view among patients and families — and even some clinicians — that bringing in the palliative care team is a sign of giving up hope. “It used to be that it was hospice that was the scary word. In many people’s minds, palliative care has taken on the same connotations of imminent death that hospice carried,” says Barnard. “There is a difficult image problem.”

Clinicians fear that merely bringing up the idea of palliative care will leave the patient and family alarmed and hopeless. “The association of palliative care in many people’s minds with imminent death is a barrier. It slows down the process of getting the right expertise into the case,” says Barnard. “For this reason, some clinicians are using the term ‘supportive care’ instead.”

There is a movement toward integrating family support and other aspects of palliative care throughout general clinical practice work. Involving palliative care in the early stages of illness “tends to have a great deal of benefit to patients and families,” says Barnard. “What we want to break down is this dichotomous thinking, where we are either talking about treating the disease or palliation.”

Bioethicists can remind the clinical team that palliative care plays a role in achieving fundamental goals of medical care: To achieve a cure or at least a long-lasting remission, to prolong life, and relief of suffering or maintaining the best quality of life. “The issue of giving good palliative care is really to achieve the most appropriate balance among these goals,” Barnard says. “As illness progresses, the balance of these may change.”

Maintaining a good quality of life is always in the forefront. In the early phase of illness, patients are sometimes willing to forego elements of quality of life to prolong their lives; this may change as the illness progresses. “Ideally, they are approaching it on the basis of really good information and emotional equanimity,” says Barnard. “But in the real world, there are sources of static that interfere with people’s thinking about shifting the goals of care.”

Bioethicists often facilitate discussions between the patient, families, and the clinical team to clear up this “static.” “But in the ideal world, you do not bring in a bioethics person to facilitate this,” says Barnard. “This should be the kind of conversation that clinicians have all the time.”

Needs often go unmet

Unmet palliative care needs in the hospital setting include inadequate management of pain and symptoms such as nausea or shortness of breath, and unaddressed emotional needs such as anxiety, says Charles F. von Gunten, MD, PhD, vice president of medical affairs at OhioHealth Hospice and Palliative Care in Columbus. In addition, many practical needs go unaddressed, “and the biggest of all — spiritual needs — the sense of personal meaning that is always challenged by serious illness,” he says.

Von Gunten gives the example of a patient admitted with worsened congestive heart failure, who is treated only to manage the biological problem of fluid overload with diuretics and bed rest. “This misses the fact that the person is terrified by the shortness of breath, is worried that death is imminent, can’t continue to work or do things for herself, and wonders if this is God’s punishment,” says von Gunten. Integrating palliative care into the hospital care plan can address these problems:

• The patient no longer fears imminent death because the sense of shortness of breath is managed;

• the patient encounters people who see her anxiety and work to relieve it;

• the patient gets help with the practical issues of living that are affected by her illness;

• the patient has someone to guide her as she searches for the meaning of the illness in the context of her own faith tradition and beliefs.

Bioethicists can advocate that every institution have access to specialist palliative care teams that can “lean in” to the cases to solve them at the bedside without resorting to deliberative ethics committee procedures, says von Gunten.

“There are two levels of expertise that are needed in any hospital. The first has been called primary, or generalist, palliative care skills,” says von Gunten. These are skills that every physician, nurse, allied health professional, and staff member need to have. “Most people in practice now did not have this as part of their professional training,” says von Gunten.

The second level is specialist palliative care, a team comprised of physicians, nurses, social workers, and chaplains with specific training and experience with difficult cases. “In many institutions, it will be the specialist team that is explicitly engaged in teaching and coaching generalist palliative care skills,” says von Gunten. In other institutions, particularly those that are highly specialized and well-resourced, the specialist palliative care team will be large enough to take care of those situations where a generalist could do the work, but it is more efficient to have the specialist do it.

“This is analogous to IV teams,” says von Gunten. “Yes, every doctor and nurse knows how to put in an IV. But it is more efficient to have the specialist team do it. They do it well, and very efficiently because they do it all the time.”

Reference

  1. Harris I, Murray SA. Can palliative care reduce futile treatment? A systematic review. BMJ Supportive & Palliative Care 2013; 3:389-398.

SOURCES

  • David Barnard, PhD, JD, Miles J. Edwards Chair in Professionalism and Comfort Care, Center for Ethics in Health Care/ Assistant Vice Provost for Interprofessional Education, Oregon Health & Science University. Phone: (503) 494-4466. Fax: (503) 418-0178. Email: barnardd@ohsu.edu.
  • Gerard Magill, PhD, Gallagher Chair, Center for Healthcare Ethics, Duquesne University, Pittsburgh, PA. Phone: (412) 396-1596. Fax: (412) 396-4500. Email: magillg@duq.edu.