Your family member, sick and in pain, is in a hospital or nursing home and no one is available to help because the person is the next room is in critical condition and the entire floor staff is rushing around to help this person. You empathize thinking that if you were in a similar situation you would want everyone rushing around to save you. What you really do not know is that this emergency is due in some cases to financial self interest or lack of staff education regarding critical or end of life care. Most individuals do not fear death as much as the experience of a painful death and many nursing homes and assisted living facility staff do not have the training or desire to educate family members about hospice and palliative care services.
How can we make the stress of having a sick loved one, piled on top of daily stress easier for all involved when hospitals, nursing homes and assisted living locations often provide end of life care? Whether you recently experienced the loss of someone you know or are currently experiencing the decline of a loved one there are steps that can be taken to ease the journey but you must be the one to ask questions because many facility staff lack training in hospice and palliative care.
According to research by Lisa Welch, Ph.D. few nursing homes or assisted living facilities have written procedures for regularly assessing residents' terminal disease status or eligibility for hospice care. Instead, many staff members base their timing and referral of hospice based on their ability to recognize decline, their personal beliefs about hospice services and their initiative in raising hospice as an option. What happens when facility staffs have little or no education relative to palliative or hospice care and family members rely on their level of experience to help their loved ones? The result is often family frustration, little or no pain assessment or management for the loved one and a painful death.
In my work, I have been personally told by facility staff that their administration does not want them recommending outside hospice services because that means that money leaves the building. Or, as the research mentions, if there is no family requiring support, hospice is not recommended and is instead provided by their own staff, lacking hospice background. In these cases, offering hospice becomes a territorial issue founded by concerns over money and staffing. How can family members trust health care providers when the concern for money and self interest overrides the care needs of their family members at an especially critical time of life? This choice should not be a decision made by facility staff but the decision of the individual or family member involved.
"Additionally, timing of hospice referrals is often delayed because staff members believe that hospice is appropriate only for the very end of life. There was often a discrepancy of weeks or months between when staff reported recognizing terminal decline and when referral to hospice occurred." It is clear that training needs exist for staff relative to recognizing declines and understanding the benefits of hospice services. In defense of facility staff, I have experienced instances where fear of breaking rules or regulations or chastisement by a superior prevents staff from doing the right thing. However in these cases mysteriously a phone call or recommendation is made and I become involved to help families navigate the situation.
Until the level of palliative and hospice care education catches up with the need, family members will have a greater level of responsibility navigating the care of loved ones experiencing declines in health. It's never too early to ask about palliative or hospice care; however it can be too late. Too late is when a loved one is days away from passing and has already likely experienced a high degree of pain and discomfort. In the instance you ask and it is not quite time for palliative or hospice care, at least you have been proactive in your own education and when the time does come you'll be more prepared and less reliant on others to recognize the signs or request assistance.
Welch, Lisa C. Ph.D. et. al. Referral and Timing of Referral to Hospice Care in Nursing Homes: The Significant Role of Staff Members. The Gerontologist. Vol 48, No. 4, 477-484.
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