This is a heartfelt letter to the friends of families receiving hospice care.
First and foremost, thank you. Thank you for being present with this friend and family who is facing the very scary prospect of end of life care. With your heart and spirit, you have continued to be present with this person in the darkest of hours and we, as hospice providers, appreciate your courage and friendship. We know from numerous studies that people fear loneliness at end of life so your continued presence and support is both wonderful and necessary.
I/ we have a request, however. We, as hospice providers, believe we are all in this together and we want/ need to be on the same page with the friends and advisors that are in our patients’ ears.
Here’s the thing- we know that talking with a hospice patient/ family is difficult. Their circumstance is overwhelming and our human nature compels us to offer help, to better a situation. The truth is that hospice is hopeful and helpful and wonderful but often times very, very hard. Families are required to provide care they never expected and the grim reality remains that the patient is not going to “get better”. The realities of hospice care with the combined efforts of the hospice team and the family at bedside can be difficult/ harsh/ scary/ exhausting.
At Weinstein Hospice, and any quality hospice provider, there is diligent work done to reduce the stress/ burden on the caregiver. However, the truth about providing care at home is families have some extraordinary responsibilities. Sometimes the personal care that is required seems untenable. And things get very, very hard.
Here’s the thing I/ we need you to know: church friends, neighbors, out of state relatives, etc. If you have entrusted the care of your dying loved one to a quality hospice program, like Weinstein Hospice, you need to feel confident that the clinical staff is making all the necessary assessments to provide the right level of care.
Unfortunately, very often we get calls from tired and scared family members saying, “So and so told me I should be getting XYZ…” Or, “So and so said when her Uncle was dying, his hospice did, blah, blah, blah, blah…”
We hear you. Those calls penetrate all of us on our team because they let us know there is fear and unrest and there is need for a response.
What those calls don’t necessarily indicate is the Medicare requirement for continuous care or acute GIP. Those requirements are strict and clear and a proper hospice will not push the limits on those distinctions. We can’t. The financial and regulatory ramifications would be devastating, especially for a small non profit like Weinstein.
But here is what I say to you, interested, devoted, trying to be helpful friends and family. I understand how hard it is to look at an exhausted caregiver and not offer a brighter alternative. Believe me when I say I have cried in my car more times than I can remember leaving a family terrified, despite the reassurance of the 24hour hospice number. I know, Cousin Sue, that his wife shouldn’t be changing his diaper. But I also REALLY know the Medicare criteria and I can’t change benefits that don’t exist.
So desperate to help friends and family, please hear me when I say, I know how badly you want to say something helpful. I know that believing hospice should do more for the person you love who seems exhausted feels helpful. I beg of you this: PLEASE do not tell a friend facing end of life care what hospice SHOULD do. IF they don’t have hospice, please encourage them to engage that resource. But if they have hospice in place, it would be most helpful to suggest that they let their team know how difficult things have become to manage.
When trying to be helpful “others” make hospice families believe they are entitled to something they are not getting, without fully understanding the Medicare requirement, they are only disrupting the palliative process.