Why Hospice Care Should Begin Sooner Rather than Later
Christopher Gray was a devoted husband who wanted his wife Lily to have the best care available when she was diagnosed with a terminal illness. However she spent all but the last week of her life in significant discomfort while being admitted to and released from the hospital multiple times. When Lily was finally enrolled in hospice care just before she died, she was able to remain in their home and receive the symptom relief she had needed for months, but there was very little time left for her to enjoy with her family.
Sadly this scenario happens every day in end-of-life care: patients get admitted to hospice just before they die and experience only a few days of comfort care and peaceful time with their loved ones. In fact a recent study[i] from Yale University shows that half of all hospice patients are admitted too late to fully benefit from the care being offered.
Research[ii] suggests that these delayed admissions to hospice occur because both patients and physicians believe that hospice care is only appropriate during the last few days of life. In fact patients in the US can be enrolled in hospice for at least the last 6 months of life and entering hospice care earlier rather than later in the course of illness has many advantages. Here are some of the benefits of early hospice admission.
Better pain and symptom control
When the hospice staff has the opportunity to care for a patient over the course of several months they have time to provide individualized management of pain and other symptoms. Because the staff gets to know the patient’s particular needs quite well, medications can be titrated and adjusted over time so that the patient experiences as much relief and comfort as possible.
Access to helpful medical supplies and equipment
Hospice care includes the provision of necessary supplies and equipment, such as a hospital bed, commode or wheelchair so that patients can be managed at home with greater ease.[iii] Earlier access to these items is beneficial to caregivers as they cope with the increasing needs of their loved ones.
Bereavement support for patient and family
Studies[iv] have shown that anticipatory grief counseling is helpful for caregivers and patients to work through emotional issues before death occurs. Earlier hospice admission allows time for the staff to offer this type of bereavement support, which can lessen the overall grief experienced by family members.
Improved quality of life
Because hospice care focuses on the wellbeing of the whole patient—physical, mental, emotional, and spiritual—earlier admission to hospice means that the patient can experience more quality time with loved ones. There is also a greater opportunity to contemplate what matters most in life since the patient is kept comfortable and experiences less stress and anxiety during the final months of life.
Fewer hospital and ICU admissions
It goes without saying that patients who get admitted to hospice earlier in the course of illness receive care at home and are much less likely to be admitted to a hospital or ICU in a state of crisis.[v] They are also more likely to die at home surrounded by loved ones, which is where nearly everyone says that they want to be when they take their last breaths.
More days of life
Contrary to the popular perception that being admitted to hospice will lead to earlier death, studies[vi] have shown that hospice patients live longer than those with a similar diagnosis who do not receive hospice care. In fact hospice patients who are admitted early enough in the course of illness have been shown to live 29 days longer than others and as already shown, those extra days are spent in comfort with greater quality of life.
So the evidence is quite strong that earlier enrollment in hospice is far more beneficial to patients and their loved ones than a last minute admission in a state of crisis. But early hospice care is only possible when patients, caregivers and providers are aware of the benefits and make it a priority. It’s important to plan ahead for these difficult decisions, document preferences in writing, and have conversations about the best care we can imagine for the end of life.
[ii] Vig, Elizabeth K et al. “Why don’t patients enroll in hospice? Can we do anything about it?.” Journal of general internal medicine vol. 25,10 (2010): 1009-19. doi:10.1007/s11606-010-1423-9
[iv] Tabler, Jennifer et al. “Missed Opportunity: Hospice Care and the Family.” Journal of social work in end-of-life & palliative care vol. 11,3-4 (2015): 224-43. doi:10.1080/15524256.2015.1108896