When your loved one is going home with hospice services do you know what to expect? It’s critical that you do, so let me help you understand the kind of care hospice will provide. It’s such an important time of life and the last thing you and your family need are unpleasant surprises and increased stress.
It is not unusual to hear that a family has been told by well-meaning hospital discharge planners, case managers or hospice representatives that “hospice will take care of everything.” I can’t tell you how many families have complained to me that about this kind of misrepresentation.
For many people “having hospice” translates to expecting that there will always be someone at the home whenever they need help. This is an unrealistic expectation.
The facts are that hospice is a very valuable but limited service for people who are in need of intermittent nursing support, to provide comfort care in the last stages of life. The last stages of life for hospice admission criteria, has traditionally meant a terminal diagnosis with a six month or less prognosis. There is some variation to how strictly different hospices interpret the Medicare guidelines, but “end stage” can last anywhere from a few hours to over six months of life.
Yes, hospice will provide an interdisciplinary team of visiting nurses, social workers and spiritual support, but exactly what does that mean?
It means that after the initial evaluation a hospice nurse will be making a home visit one to several times a week depending on the changing medical needs of your loved one. Together with a social worker they will offer support and education to the patient, family and caregivers.
Hospice will not provide nurses or aides to help you care for your family member on a daily basis. Until and unless there is a need for extended nursing care to palliate temporarily unmanageable symptoms, or to give clinical support called “crisis care” during the last few hours of life, the daily responsibility of caring for your loved one will fall on you.
Simply put, this means you will be alone most of the time even with hospice services if you do not have a caregiver in place through a home care agency.
“Crisis care” is handled differently by different hospices. Ask what your hospice’s policy is about “crisis care” so you will know what kind of nursing support you can expect as your loved one enters the active dying phase. I’ve seen different hospices define “crisis care” very differently, so asking for a written explanation of their crisis care policy is a good idea.
Also, ask if hospice will be including an “emergency kit” or “comfort care kit.” This is an emergency supply of all the medications you will need to have in order to manage pain and other difficult symptoms associated with end of life care. It is kept in the refrigerator for easy access when hospice nurses are not at the home. This kit usually contains pain medication (narcotic and non-narcotic), anti-nausea medication, anti-cholinergic medications (to help dry secretions), anti-anxiety medications, laxatives oral and suppository etc. The last hospice I worked with had decided to dispense with the emergency kits and this left the family in distress when they needed such medications and couldn’t get a hospice nurse to the house in time. The emergency or comfort care kit is an integral part of hospice services and should never be omitted from the plan of care.
If you need a caregiver to stay with you and your family member to provide care and support throughout the day or night, you will need to hire a caregiver through a home care agency. If you need assistance to administer the strong narcotics and other medications and treatments needed to keep your loved one comfortable, hiring a private duty nurse is a good option.
A geriatric nurse care manager who is experienced in hospice care is another great option to help you get the most out of the patchwork of services available to make this a peaceful transition.
I want to encourage you, if you find yourself confused or frustrated by your hospice service and don’t know where to turn, please don’t hesitate to call a geriatric care manager to assist you. Guarding and guiding patients and families at the end of life is a personal passion of mine. You and your loved ones deserve the best care at all times but especially when you have to say goodbye.
Grace Care Management’s professional team of caregivers and geriatric care managers are here to help. You can reach us by calling (888) 850-7871.