Executive Summary

Caregivers were more likely to pay to extend an end-stage cancer patient’s life than the patients themselves were, according to a recent study. Suggested approaches to ensure ethical care include the following:

• Offer palliative care in lieu of life-sustaining treatments that are unwanted by the patient.

• Consider that caregivers’ biases and emotions may be influencing what they choose for the patient.

• Support patient preferences for good pain management and the opportunity to die at home if desired.

 

Caregivers were three times as likely as end-stage cancer patients to pay to extend the patient’s life by one year, according to a recent study.1 The research team, led by members of the Lien Centre for Palliative Care and collaborators from the National Cancer Centre Singapore, surveyed 211 patients and their caregivers. Participants were asked to choose their most-preferred end-of-life scenarios out of a series of options, including years of life remaining, degree of pain experienced, place of death, level of burden on caregivers, quality of healthcare experience, and cost. Based on the results, the authors quantified patients’ and caregivers’ willingness to pay to improve their end-of-life experience.

The study’s findings weren’t surprising, says Charity Scott, JD, MSCM, Catherine C. Henson Professor of Law at Georgia State University College of Law in Atlanta. Prior research demonstrates that there can be significant divergence between a patient’s actual treatment preferences and what treatments the patient’s caregivers or providers think the patient would want or should have.2,3

“What is new about this study is assessing the relative value that patients and caregivers place on various end-of-life treatments for stage IV cancer patients by comparing their willingness to pay for them,” says Scott.

Caution should be exercised in generalizing from this research, which was undertaken in Singapore, to Western hospital settings due to specific cultural and social factors which pertain to the study population, notes Scott. For example, researchers asked about willingness to pay for certain treatments. In Singapore, approximately three-quarters of health expenditures are paid directly in cash or through patients’ or family members’ health savings accounts. “With this caveat in mind, there are nonetheless certain common themes and lessons from this study that are relevant to bioethicists, patients, caregivers, and providers in other countries,” says Scott. These themes include the following:

• Where the patient is able to express his or her own preferences about treatment, providers and caregivers should take great care to engage the patient in conversation and to elicit and respect those preferences.

• Supporting patient preferences for good pain management and the opportunity to die at home if desired are consistent with ethical precepts to promote patient autonomy and quality of life.

• It is possible that caregivers’ own subconscious biases and emotional responses may be influencing the course of treatment they would choose for the patient. “For example, are their own fears of losing a loved one causing them to deny the gravity of the patient’s terminal illness and its effects on the patient’s quality of life?” asks Scott.

Clear communication

A patient decides that he or she would not want to be resuscitated and, therefore, wants the defibrillator to be turned off, but his or her spouse feels uncomfortable with this and convinces the patient to leave it on. Sarah C. Hull, MD, MBE, clinical faculty in the Section of Cardiovascular Medicine at Yale-New Haven (CT) Medical Center, has seen this scenario unfold several times.

“Many caregivers feel a tremendous amount of guilt when their friend or loved one is dying,” says Hull. “Sometimes, in order to assuage that guilt, they push for everything to be done in order to keep that person alive as long as possible, no matter how aggressive the treatment.”

Hull tries to make it clear to caregivers that they should not feel guilty about “pulling the plug.” She tells them, “Sometimes the most loving and selfless thing you can do is to allow doctors and nurses to focus all our energy on making the person comfortable and allowing him or her to die with peace and dignity.”

“It absolutely paramount that when a patient is critically ill, physicians communicate clearly not only with the family, but also with each other,” adds Hull. She often provides cardiology consultation for patients with multiorgan disease in the intensive care unit (ICU). “I cannot overstate how important it is to have conversations with the ICU team about the patient’s trajectory and get on the same page before I talk with the family,” says Hull.

It can be tempting to sugarcoat a dying patient’s condition and say, “Let’s just see how she does,” when it is clear that the patient has irreversible disease which is reaching its end stages. “Nobody wants to be the bearer of bad news,” says Hull. “As difficult as it is, I try to be clear without being too specific.” Hull may tell a family member, for example, “Your mother is very sick, and while doctors are not very good at making predictions, my best guess is that she has only days to weeks left. I apologize for being so blunt, but I think it would be unfair and disrespectful to you not to tell you the whole truth.”

Not all physicians are comfortable with this kind of communication. “Bioethicists could play a pivotal role in training them if such a formal service were introduced,” says Hull. “Unfortunately, bioethics education is often limited in medical school and residency.”

Compassion is ethical response

In some cases, it is clear to providers that a caregiver’s choices are not aligned with the patient’s wishes; the provider is ethically obligated to honor a competent patient’s preferences. Respect for patient autonomy and patients’ rights of self-determination over their healthcare have become hallmarks of Western bioethics, says Scott. “That said, there is much that providers can do to help alleviate caregiver and family distress where the patient chooses less aggressive treatment than they would choose on her behalf,” she says.

This includes providing empathetic counseling and support to the patient’s family and caregivers, with the goal of easing the patient’s concerns over any emotional turmoil caused by conflicts over choices for care. “Compassion is always a good ethical response for providers, be it for the patient or for her caregivers,” says Scott.

Caregivers may overestimate the benefits of life-sustaining treatments for a terminally ill cancer patient and underestimate the benefits of good palliative care. “By offering palliative care in lieu of life-sustaining treatments that are unwanted by the patient, providers can show caregivers how, together, they all can continue to provide excellent care to the patient at the end of life,” says Scott.

References

  1. Malhotra C, Farooqui MA, Kanesvaran R. Comparison of preferences for end-of-life care among patients with advanced cancer and their caregivers: A discrete choice experiment. Palliative Medicine, 2015; DOI:10.1177/0269216315578803.
  2. Sulmasy DP, Terry PB, Weisman CS, et al. The accuracy of substituted judgments in patients with terminal diagnoses. Ann Intern Med 1998; 128(8):621-629.
  3. Tang ST, Liu TW, Lai MS, et al. Concordance of preferences for end-of-life care between terminally ill cancer patients and their family caregivers in Taiwan. J Pain Symptom Manage 2005; 30(6):510-518.

SOURCES

  • Charity Scott, JD, MSCM, Catherine C. Henson Professor of Law, Georgia State University College of Law, Atlanta. Phone: (404) 413-9183. Fax: (404) 413-9225. Email: cscott@gsu.edu.
  • Sarah C. Hull, MD, MBE, Clinical Faculty, Cardiovascular Medicine, Yale-New Haven Hospital (CT). Phone: (203) 789-3363. Email: sarah.hull@yale.edu.