The good news is that patients are receiving more time in hospice. The most recent report from the National Hospice and Palliative Care Organization (NHPCO) shows the average length of stay in hospice at 24 days.¹ The number of days people have in hospice has been rising for the past several years. The bad news is that this still falls considerably short of recommendations for how much time people should have in hospice.

How Much Time Should People Have in Hospice?

Medicare’s hospice benefit offers six months in hospice, and people can go longer when there are extenuating circumstances. Expert consensus holds that people should receive at least three months in hospice.^2,3 Shorter lengths of stay cause patient and family dissatisfaction.^4,5 For instance, among families who later reported the hospice referral occurred too late, the average length of service was 48 days. Compare this to families who said the hospice referral occurred at the right time. Their average length of stay was 98 days.

Compared to other medical options, hospice has been found to improve symptom control – especially cancer pain and painful breathing. Home hospice also improves emotional wellbeing for patients and families. For family, the emotional improvements achieved through hospice care even extend well beyond the loss of a loved one. However, hospice needs time to achieve these benefits.

How Much Time Are People Receiving in Hospice?

The NHPCO releases periodic reports about the state of hospice in the U.S. Their most recent report shows that Americans who receive hospice get an average of 24 days in the program. That’s less than a third of the recommended service. Nearly ¾ of Americans who receive hospice get less than 180 days. What’s more, 28% of patients receive hospice for less than a week.

Why Is Hospice Too Short?

Patients and their families receive too little hospice for two reasons. One is that it can be hard for doctors to estimate how long patients have to live. Optimism may influence doctors to overestimate. The other reason is that many patients and families are not fully aware of hospice, what it looks like when initiated at the right time, and how it benefits patients and families. A lack of understanding of hospice means many families don’t know when to ask for it.

How to Ensure a Timely Start to Hospice

Patients nearing the end of life should be active in their care management. Ultimately, only the person with the advanced disease can decide when and if hospice is right for him or her. Doctors and family can make recommendations, but the decision lies with the patient or the patient’s healthcare proxy.

When a disease reaches an advanced state, it’s a good time to sit down with a hospice representative and learn more about hospice. Patients and families should have this conversation even if they don’t know when or if they will choose hospice. A good time to start gathering information is when the life expectancy is one year.

Patients can also help their doctors do a better job of estimating life expectancy. Doctors care about their patients and this tends to result in most doctors over-estimating how long their patients have to live.^7,8 Research suggests the “would you be surprised” question helps make estimates more accurate. If a patient asks “would you be surprised if I died in six months?”, they tend to get a more accurate estimate than if one asks “how long do I have to live.”

How to Make Life-Expectancy Conversations Easier

Talking about life expectancy can be hard for some people. The high emotions of the topic often lead patients to avoid the conversations. Instead, they just hope the doctor will intuit their wants and intentions and guide them the right way. If a person is having trouble discussing the topic with doctors, an alternative approach can set up a sort of program in advance. For instance, patients can ask to not be told life expectancy until it reaches a certain point. Patients can also ask to be referred to hospice at a certain point. This programmatic approach helps patients let their wishes be known without having to repeatedly receive difficult information.

References:

1. NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization, April 2018.
2. Teno J, Shu J, Casarett D, et al Timing of referral to hospice and quality of care: Length of stay and bereaved family member’s perceptions of the timing of hospice referral. Journal of Pain and Symptom Management. 2007; 34: 120-125.
3. Rickerson E, Harrold J, Kapo J, et al. Timing of hospice referral and families’ perceptions of services. Are earlier hospice referrals better? Journal of the American Geriatric Society. 2005; 53: 819-823.
4. Schockett E, Teno J, Miller S. Late referral to hospice and bereaved family member perception of quality of end-of-life care. Journal of Pain and Symptom Management. 2005; 30: 400-407.
5. Miceli P, Mylod D. Satisfaction of families using end-of-life care: Current successes and challenges in the hospice industry. American Journal of Hospice and Palliative Care. 2003; 20: 360-370.
6. Nelson R. Surprise question effective at predicting end of life. Medscape. 2015 Oct 8.
7. Moroni M, Zocchi D, Bolognesi D, et al. The “surprise” question in advanced cancer patients: A prospective study among general practitioners. Palliat Med.2014; 28(7): 959-964.