Journey of the End of a Lifetime: Today’s The Day

by Joanna Smith on Jul 23, 2016

How does it feel for P.S. to wake us this morning knowing that today is the last day of her life? She knows the day she will die.
People have been writing and asking me to talk more about my personal reactions as I help P.S. and her doctor create this event? ending? closure? for her. I’m not even sure what to call it.
I have intentionally kept my personal thoughts to a minimum because this is about P.S., not me, but P.S. told me it would be ok to teach others about her experience, so I will, both in my classes at UC/Berkeley and in my training program for advocates. so part of that is about me–here goes.
Our dog jumped up on our bed at 6 a.m. this morning to wake us (“time to eat; time to walk”). I opened my eyes: today’s the day. I have been eating a lot of ice cream this past week! Somehow that has been calming. I have been gardening because the earth has felt good for my soul; I have walked the dog and meditated–all to help me focus on living while she is dying. I think a lot about how I wish this were a possible choice for people with dementia–but I know it is not. There is a part of me that doesn’t believe this is happening, while it is clearly happening. And I see the need to keep good boundaries in place so I can think and plan and reassure P.S. and her family that everything is in place. A tinge of anxiety, mostly very calm right now…..

What would you do if you knew it was the last day of your life? With certainty? That’s the odd part about this for me. I have watched many people die, either at home or in the hospital, but this is different. In those cases, we were waiting without knowing: with P.S., we know.
For me, this morning is a time to be calm and do the kinds of things that are relaxing for me so I can focus completely on P.S.and her family when I’m there. She has requested that the physician and I be the only two people in the room when she actually takes the medication. Once she is asleep (which will happen very quickly), she would then like her family to come in and out of the room, sit with her, hold her hand. We have a wonderful nurse and social worker from hospice who will be present in the house (they cannot be in the room when P.S. takes the medication–again, a different discussion), talking about what they see as P.S. dies, and helping the family understand the process. The physician and I will stay until she has died.
This is the day, and I hope it is a gentle death for P.S. She has thought and planned for this day, and now it is here.

Journey of the End of a Lifetime: Let’s Add Hospice

by Joanna Smith on Jul 21, 2016

I am working with an amazing, compassionate physician in helping P.S. end her life. He has thoughtfully put together a protocol for the patients he is working with (to me they are clients, but that’s another discussion!). He is not “just” an End of Life prescribing doctor: he talks with people about all the options for them as they approach the end of their lives, and he has referred patients to Advanced Illness Management Programs and Palliative Care if they are really not a candidate for Aid in Dying.
Part of that protocol is that they agree to enter into Hospice care as part of his work with them if they do quality for Aid in Dying.

A Complex Wrinkle (and short course in Medicare, for those unfamiliar with it)
P.S. is currently in a nursing home with Medicare Part A (which covers in-patient, skilled care) covering her for Rehab services (think: physical therapy and occupational therapy). P.S. has told me she not longer wants rehab (“I can’t do it and I’m not getting stronger”). So I talk with the Director of Nurses at the Nursing Home and let her know that P.S. wants Hospice, and the nurse agrees to discontinue the Medicare Part A rehab billing so P.S. can access her Medicare Part A Hospice benefit: you cannot “double dip”: either Medicare Part A covers rehab in a nursing home OR they will cover Hospice in a nursing home, not both. P.S. will then have Hospice in the nursing home, and Medicaid will cover her room and board there until we can bring her home in a few days, once the Aid in Dying is set up.

Can you see where this is going?

I coordinate with Hospice, they send a nurse to the nursing home to enroll P.S. in Hospice, and find that the nursing home has not DIS-ENROLLED her from her rehab benefit, so Hospice can not ENROLL her in Hospice. Why? Payor mix is probably a large part of this. Medicare’s reimbursement for a day in a nursing home is much higher than Medicaid’s, so it is to the nursing home’s advantage to keep her on the rehab payment rate rather than the Medicaid rate.

I am furious when I hear this, but a quiet, determined furious. I go to the nursing home and talk with the CEO, saying this is not right: their patient is requesting Hospice, and we cannot bring it in because they are refusing to stop billing under rehab to Medicare. What I don’t say, but he understands clearly, is that this is Medicare fraud.

Sometimes the unsaid is more powerful than the said.

The issue is quickly resolved; her Rehab benefit is discontinued that day. Because this has been stressful for P.S., she decides to go home the next day and Hospice will ENROLL her that afternoon at home. While the facility is surprised, they offer to provide her transport home at their expense. We all–P.S., the physician, Hospice and myself, give a huge sigh of relief.

Next Post: Home to Die
BEST PRACTICES FOR HEALTHCARE ADVOCATES: pick your battles wisely and remember that quiet determination can produce far better results, frequently, than aggressive confrontation.

The Funeral Advocate: A New Kind of Advoate

by Joanna Smith on Nov 18, 2010

What is one of the most vulnerable times in life?  It is when a family member is dying or has just died.  You may be distraught, confused and overwhelmed.  And what is one of the most immediate tasks at the time?  Considering and making funeral/memorial service and cremation/burial arrangements.  Now there is a new kind of advocate to help you at that time.

It’s so new, there isn’t a specific title to search for yet on the internet!  It’s an advocate who knows the funeral/mortuary process inside and out from working years in that field, and now wants to work directly for families, helping them through the decision-making and arrangements process while ensuring they are not spending unnecessary amounts of money and are receiving the services they want and need.  Perhaps there was a contract established for services years ago and you need someone to ensure that the contract is being fulfilled.  This advocate can do all that and more, giving you peace of mind at a time of high stress.

To find out about these advocacy services and more, contact Healthcare Liaison at 510-704-8476 or