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It seems that those with chronic diseases or the terminally ill hold on until the holidays or until after the holidays and then they just decide "it's time". Hospitals and nursing homes are filled with the sick. Families are stressed about limited physician visits and staffing availability more because they don't realize this is the norm than because this is an unusual occurrence. Sometimes it does take a squeaky wheel to get the necessary attention. The newspaper obituary columns are filled with loved ones who have moved on and mortuaries busy with celebrations of life.
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.
Further research indicates "a belief that hospice does not add value to nursing home end of life care or that hospice is only for crises. These were the main factors in the lack of hospice referrals by nursing home staff. In other cases, staff assumed that hospice support was unnecessary for family members because the staff did not see the family in crises." 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. Most individuals do not fear death as much as the experience of a painful death. In the instance you ask and it is not quite time for palliative or hospice care, at least you've 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.
Palliative and hospice care, regardless of the location provided, is intended to complement care provided by facility or home care staff. This additional support often serves as a comfort to family members experiencing a high level of stress and the daily emotional ups and downs during a critical time of care for their loved one. It is important to remember that care for the individual must not be territorial. It is important to remember that assistance and support for dying individuals can benefit from collaboration with outside hospice organizations. Hospice and palliative care should serve the patient, not the personal or organizational interests of the provider of the location or the ongoing care team.
(1) 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.
Copyright 2011 Pamela D. Wilson, All Rights Reserved.
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