Hospice sends nurses, aides, and other caregivers to the homes of patients with advanced, terminal illnesses. Expert consensus holds that people should receive hospice for three to six months.1-3 This three-month minimum promotes hospice’s ability to provide the physical and emotional support that helps patients and their family caregivers. Unfortunately, for most U.S. families, time in hospice falls short of recommendations. The median length of stay is only 18 days. That means more than half of Americans receive less than three weeks of hospice care. Why do most people receive less time in hospice than recommended?
Late Referral Promotes Dissatisfaction
First, let’s consider the importance of a quality length of stay in hospice. Hospice is unique among healthcare benefits. Hospice is tailored to symptom control, emotional support, and care coordination during end-of-life care. When patients receive too little time in hospice, families are more likely to be dissatisfied with the end-of-life care. Families who said the hospice referral occurred too late were 48% more likely to say their loved one had too much pain when breathing. They were 37% more likely to say they needed more help with personal care. They were 110% more likely to be dissatisfied with the emotional support. Families who said the hospice referral occurred too late were 119% more likely to express concerns about care coordination.4 Choosing hospice late is also connected with shorter life, worse mental health outcomes, and greater costs to patients and families. Choosing hospice at the right time gives families access to the program designed for end-of-life care. Given the importance of timely hospice care, why do most people receive less time in hospice than recommended?
Why Most People Receive Less Time in Hospice than Recommended
There are multiple possible reasons that people get hospice for a few days instead of for 12 weeks.
Doctors and Facilities
Patterns in hospice referrals vary between doctors and facilities. Some doctors or hospitals are more likely to recommend hospice than others.
Medicare and most other insurances require that people not receive cure-oriented care while in hospice. This condition can be scary for patients and families, but it doesn’t need to be. If a patient is actively pursuing a cure, that patient should choose palliative care rather than hospice. In most cases, it’s time for hospice when doctors tell families that available treatments are more likely to harm than help. Patients can use hospice when they are not receiving curative treatment. Should that situation change and doctors want to try other treatments, patients can discharge from hospice immediately, at any time.
It can be difficult to accurately predict how long someone has to live. This is especially true when doctors are emotionally involved with patients and hoping for remission. Doctors with good relationships with their patients tend to over-estimate how long their patients have to live.5,6
Patients often choose to delay hospice enrollment. Sometimes this stems from miscommunication. In end-of-life care, it’s a common phenomenon that doctors will document telling patients they are approaching end of life while patients say they never had that conversation. Additionally, some patients specifically ask to not be told how long they have to live, which also ties a doctor’s hands in recommending hospice. Finally, some people have the misconception that choosing hospice means giving up hope. The opposite is true. Choosing hospice means embracing hope for the highest possible quality of life during a very important time of life.
- Teno J, Casarett D, Spence C, et al. It is ‘‘Too Late’’ or is it? Bereaved family member perceptions of hospice referral when their family member was on hospice for seven days or less. Journal of Pain and Symptom Management. 2012; 43 (4): 732- 738.
- Yamagishi A, Morita T, Kawagoe S, et al. Length of home hospice care, family-perceived timing of referrals, perceived quality of care, and quality of death and dying in terminally ill cancer patients who died at home. Support Care Cancer. 2014; doi 10.1007/s00520-014-2397-7.
- 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.
- Schockett E, Teno J, Miller S, Stuart B. Late referral to hospice and bereaved family member perception of quality of end-of-life care. J Pain Symptom Manage. 2005; 30: 400-407.
- Nelson R. Surprise question effective at predicting end of life. Medscape. 2015 Oct 8.
- 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.