Does Our Health Care System Offer the Possibility of a ‘Good Death’?

By Sarah Josephson, MSW, LMSW

Though each of us will die, chances are you haven’t considered what a “good death” means to you. Yet, if you, like 70% of Americans, end up in a hospital or long term care facility at the end of your life, you might wish you had. You will be asked—if you retain mental capacity—about your wishes to mechanically prolong your life if/when your heart stops. You will be asked to weigh quality of life against mere survival. For most, these decisions follow a series of conversations not only with trusted family, but with physicians and social workers on staff at the facility. Insurance companies reimburse facilities for these conversations only when doctors and/or nurses are involved. But another person who is equally invested in this task—the palliative care social worker (PCSW)—cannot bill for his/her time. That must change. The PCSW routinely initiates the conversation, termed goals of care (GOC), by engaging the patient or family member together with the doctor. While the doctor contributes relevant clinical information, the PCSW is specifically trained to offer palliative options, taking into consideration a more holistic view of the patient. This helps a patient to synthesize the clinical, psychological, social, emotional, and spiritual needs—all of which factor into a person’s decisions about end-of-life (EOL) care. Reimbursing for the palliative care social worker would make GOC discussions more available and more effective. As a result, greater numbers of patients would be able to make informed decisions about their own EOL care.

Patients for whom doctors prognosticate survival of six months or less, are considered to be at EOL, and are at risk of losing their autonomy. These patients are often not adequately informed about their medical condition and therefore are forced to make decisions about care without knowing all the facts. As such, their ability to choose treatment is greatly compromised. That may be what is happening to the 75% of Americans who are eligible (Richards & Takeuchi, 2006) and yet, still not accessing the assistance of the Medicare hospice benefit. Furthermore, according to the 2013 Medical Advisory Commission, of those who are counted as dying with hospice, the median length of stay remains only 18 days. This means that those admitted to hospice are doing so only in their very last days of life, and thus not receiving the full benefits that hospice has to offer.

Considering All the Implications
The contrast between what Americans say they want for EOL care and what they are getting, remains a startling dichotomy. Perhaps it is because most of us haven’t spent the time considering the medical and ethical implications of the available treatment choices, that Americans are flustered when it comes to making a decision. That may be why public opinion polls show that most Americans say they would prefer to die at home but only 24% actually do (Teno, et al., 2013). The question remains: Why are Americans, who say they want to die at home with comfort measures, overwhelmingly unable to do so?

An examination of who among us choose palliative options at EOL leads to some answers. Doctors are consistent in their views according to Gallo et al.’s (2003) study. Regarding their own wishes for end of life treatment, physicians overwhelmingly chose palliative care without life sustaining measures (Gallo, et al., 2003). More than 85% said they would rather forego CPR, mechanical ventilation, dialysis, and chemotherapy if they were given an EOL prognosis (Gallo, et al., 2003). More than 80% of these physicians said they would choose comfort measures including pain medication at this point (Gallo, et al., 2003).

Conversely, patients make very different decisions. In a study of Americans who died from kidney disease between 2001 and 2003, only 13.5% chose hospice in place of aggressive treatment (Murray, Arko, Chen, Gilberston, & Moss, 2006). If doctors—experts in medical care and treatment options—are overwhelmingly choosing palliative options at EOL, why are the rest of us behind the curve? Comparing the advance care plan of physicians to those of ordinary Americans underscores the importance of medical knowledge. Those who realize the implications of a prognosis are more likely to choose palliative and hospice options. Those with a limited understanding are more likely to hold out hope for a cure and continue with aggressive treatments. Gruneir et al.’s (2007) study specifically links education levels to end of life care choices. In that analysis, the greatest proportion of hospital deaths in the U.S. occurs among minority populations with the least education (Gruneir, et al., 2007). Yet, when considering only those who have been adequately informed of a terminal prognosis and given options for palliative care, most patients consistently choose palliative options. In a study of oncology patients with a prognosis of advanced cancer, 83% chose pain management and the option to forego aggressive treatments when they fully understood their prognosis (Mack, Weeks, Wright, Block, & Prigerson, 2010).

The Palliative Care Information Act (2010) in NY may have increased the degree of communication between doctors and patients about EOL, but the problem persists that the option to discuss goals of care is not always there. And when it is there, it is not always as informative and helpful as it ought to be. This is because doctors must contend with a range of conflicting factors hindering them from adequately offering goals of care consultations. Four in particular come to mind:

• Doctors lose money when they refer patients for hospice. A fee for service model rewards doctors financially for keeping patients in acute settings (Friedman, Harwood & Shields, 2002).

• A doctor’s decision-making can be influenced by her/his own clinical inclination to solve a problem rather than help a patient (Friedman, Harwood & Shields, 2002). Without a doctor’s referral a patient is not eligible for hospice.

• Doctors are not trained to have these conversations (Meier, 2014). One study found that 30% of physicians reported that they are uncomfortable discussing a terminal prognosis (Stolman, Dunn & Levine, 1990). Compounding this is the evidence that many doctors are not aware of the criteria that make patients eligible for hospice (Brickner, Scannell, Marquet, & Ackerson, 2004).

• Doctors may worry that a hospice referral is unethical because it may seem to be a refusal to help the patient. Doctor’s do not get formal training on palliative and hospice care. To many it is seen as an alternative to curative treatment, as opposed to an option along the same medical treatment continuum (Richards & Takeuchi, 2006).

The recent debate about the Affordable Care Act and its provision to require GOC consultations homed in on the potential for abusive practices in health care. We are distrustful of government’s role when end of life decisions are linked to the very health care that government provides. Yet, to eliminate these consultations altogether is to deprive each of us the care and information needed to make informed decisions. What is needed is to make these consultations more accessible, not less.

Enabling the Role of the Palliative Care Social Worker
That can and should be accomplished by enabling the role of the palliative care social worker to work alongside the doctor and nurse. As Meier (2011) suggests, the main barrier to service of palliative care is the lack of sufficient professionals trained in palliative care. Palliative care is now a field of focus within a number of social work graduate programs. Academic programs specifically geared toward the needs of the palliative care field train social work students to engage patients and their families about their concerns. These may range from symptom management, social, financial and legal concerns, belief systems as they relate to end of life choices, and medical choices for life-sustaining measures. Palliative care social workers are trained using theories of attachment, loss, and bereavement. They are taught to collaborate with an interdisciplinary team of doctors, nurses, and chaplains. Also, they are guided by a multidimensional perspective that helps to guide conversations about ethical dilemmas in palliative treatment plans. The specific training in this field enables the PCSW not only to facilitate these conversations with patients but also to assist doctors in communicating with patients. In this way the PCSW is often the enabler—helping doctors to realize that their patients need to know. Only when all members of the palliative care team are on equal footing will the members function as a true team.

— Sarah Josephson, MSW, LMSW, is a Zelda Foster fellow in Palliative and End of Life Care at the NYU Silver Graduate School of School of Social Work.

References

Brickner, L., Scannell, K., Marquet, S., & Ackerson, L. (2004). Barriers to hospice care and referrals: survey of physicians’ knowledge, attitudes, and perceptions in a health maintenance organization. Journal of Palliative Medicine, (7)3, 411-418.

Friedman, B. T., Harwood, M. K., & Shields, M. (2002). Barriers and enablers to hospice referrals: an expert overview. Journal of Palliative Medicine, (5)1, 73-84.

Gallo, J. J., Straton, J. B., Klag, M. J., Meoni, L. A., Sulmasy, D. P., Wang, N.Y, & et al. (2003). Life sustaining treatments: what do physicians want and do they express their wishes to others? Journal of American Geriatrics Society, 51(7), 961-969.

Gruneir, A., Mor, V., Weitzen, S., Truchil, R., Teno, J., & Roy, J. (2007). Where people die: a multilevel approach to understanding influences on site of death in America. Medical Care Research and Review, (64)4, 351-378.

Mack J. W., Weeks, J. C., Wright, A. A., Block, S. D., & Prigerson, H. G. (2010). End-of-Life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. Journal of Clinical Oncology, (28)7, 1203-1208.

Meier, D. E. (2011). Increased access to palliative care and hospice services: Opportunities to improve value in health care. Milbank Quarterly, 89(3), 343-380.

Meier, D. E. (2014). ‘I don’t want Jenny to think I’m abandoning her’: views on over-treatment. Health Affairs, 33(5), 895-898.

Murray, A. M., Arko, C., Chen, S. C., Gilberston, D. T., & Moss, A. H. (2006). Use of hospice in the United States dialysis population. Clinical Journal of the American Society of Nephrology. 1(6), 1248-1255.

Richards, J. & Takeuchi, L. R. (2006). Factors that influence physicians’ recommendation of hospice care: an exploratory study. Journal of Hospital Marketing & Public Relations, (17)1, 3-25.

Stolman, C. J., Gregory, J. J., Dunn, D., Levine, J. L. (1990). Evaluation of patient, physician, nurse and family attitudes toward do not resuscitate orders. Archives of Internal Medicine, 150(3), 653-658.

Teno, J. M., Gozalo, P. L., Bynum, J. P., Leland, N. E., Miller, S. C., Morden, N. E., & et al. (2013). Change in end-of-life care for Medicare beneficiaries site of death, place of care, and health care transitions in 2000, 2005, and 2009. The Journal of the American Medical Association, (309)5, 470-477.