Across America, most people receive less time in hospice than experts recommend. This may result in lower quality of life, shorter life (because hospice tends to lengthen life), and financial burden (because hospice tends to save money for patients). Expert consensus holds that people should receive hospice for three to six months.1-3 Hospice sends nurses, aides, and other caregivers to the homes of patients with advanced, terminal illnesses. A three-month minimum promotes hospice’s ability to provide the physical and emotional support that helps patients and their family caregivers.
What Do Families Say is the Right Time for Hospice?
Interestingly, families tend to agree that three months is the right length for hospice services. Erica Shockett, MD, and fellow researchers surveyed 234 families of hospice patients.4 They asked about the ability of hospice to deliver needed services and satisfaction with hospice care. Shockett and colleagues then correlated answers with length of stays in hospice. Families were five times more likely to say the hospice referral occurred too late. Among the respondents who said hospice started too late, the average time in hospice was 47 days. Among the families who said hospice started at the right time, the average time in hospice was 98 days.
Late Referral Promotes Dissatisfaction
Other care delivery environments and programs are not structured like hospice. 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. Choosing hospice at the right time gives families access to the program designed for end-of-life care.
Why Do Most People Get Shortened Hospice Services?
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 Policies: 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.
Prognostication: 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
Patient Preferences: 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 the highest possible quality of life during a very important time of life.
How to Ensure Your Family Gets the Right Hospice Advice
If families want the full benefits available through hospice, there are a few things they can do to ensure a timely hospice referral.
- Make your wishes known. Let every doctor and nurse know if you want to know how long you have to live or if you don’t want this information. Tell them when you want this information. They can wait until the estimate is one year, six months, or three months before saying anything.
- Help doctors estimate length of life. Doctors get influenced by their emotions for their patients and tend to overestimate length of life. Research suggests that the “would you be surprised” question gets more accurate answers. For instance, instruct your doctors to ask themselves, “Would I be surprised if this patient died in 12 months?” “Would I be surprised if this patient died in six months?” A “no” answer to this question yields more accurate estimates.5,6
- When doctors offer treatments, ask detailed questions about the odds of success and ways this will affect you if it doesn’t work. These decisions can get harder as patients get more tired. See if you can set up parameters for this decision-making with your doctor early in the course of care. Doctors can then say, “This treatment fits your preferences for benefits,” or “This treatment does not fit your preferences for benefits and/but . . .”
In conclusion, hospice has a lot to offer. Chief among these benefits is greater quality of life for patients and for their families. Getting the most from hospice means patients need to be in hospice longer than a few days. There are many reasons that most patients do not spend the recommended amount of time in hospice, but there are strategies families can employ to help ensure their wishes and values are observed.
- 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.