Journey of the End of a Lifetime: Home to Die

by Joanna Smith on Jul 22, 2016

She is now home, and Hospice is in place. We still have the issue of the medication to resolve, but the physician has been diligently searching for pharmacies and options. Since neither Seconal itself nor its generic equivalent is available anywhere in Washington, Oregon or California at this moment and we have a person who wants to die in a few days, waiting to sort out the Seconal problem is not an option. P.S. has to be able to swallow the medication herself, and if we wait too long, she will lose her ability to do that and won’t be able to follow her plan. So we go with a drug cocktail: morphine sulphate, phenobarbital and chloral hydrate.

These drugs are readily available at a compounding pharmacy, and they cost $400 instaed of $3,500. Since pharmacies are not currently accepting any insurance payments (because the insurance world has not sorted out whether they will pay or not), this is also privately paid for by my client. Dying is not free….
So finally we have her home and we have a pharmacy preparing her drugs.
How does she envision her last moments? We talk about who she wants in the room with her when she takes the medication. Initially she says just the physician and myself: she wants her family to say goodbye and be in the next room when she takes it, and then come in to sit with her. The Hospice nurse and social worker cannot be in the room, per Hospice protocol. That is the current plan, but I reassure her that she can change whom she wants with her at any point in time.

We laugh about how absurd it feels to be planning her own death. “I never belonged in the nursing home”, she says: “those people were trying to get well and I didn’t want to and couldn’t”. She smiles: “My plan was different.” It turns out she had been watching the news, planning her time frame and waiting for when she could legally end her life. “That woman who went to Oregon” (Brittany Maynard) “she did it. I thought about moving to Oregon, but then the law passed, so I could do it here.” Another smile. “This is better”.

Tomorrow’s Post: Today’s the Day

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.

Journey of the End of a Lifetime: It’s Always Financial

by Joanna Smith on Jul 20, 2016

I am working alongside a compassionate End of Life Care Options Physician: together we are a team helping P.S. navigate these last days of her life.
Poignant conversations these last few days with P.S. She is firm in her resolve to use Aid in Dying. To be clear, I ask if she feels under any financial pressures to use it: while she has a diagnosis that qualifies her to use the Aid in Dying Medication (and a life expectancy of less than six months, also another requirement under the law), ideally financial concerns should not drive a person’s decision to use Aid in Dying.
Really? Dream on.
Finances play a significant part in people’s decisions about their end of life care. We don’t have, in the U.S., a “wrap around” system that can provide the kind of end of life care that is affordable AND in the location that most people prefer for their death: home.
So, people look at the kind of care they would need–in this case, total care–and where they would like to receive it–in this case, at home. But economics tell a different story, and that is the one that partially drove P.S.’s decision. She felt the care would take all of her finances, and she wanted to leave something to her family. We delude ourselves when we think that finances don’t play a part….
So. P.S. is clear she wants to proceed, and we have talked openly about the medical, social, emotional and financial aspects of her decision. How else do finances play a part?

In California, the drug that was intended to be used is Seconal, an old, old drug which was very inexpensive previously. But with the advent of the Aid in Dying or (EOLOA as we are calling it in California), the price of Seconal has risen to between $3,500 and $4,000 for the prescription to end one’s life. There is a back-up prescription, but P.S. had a dilemma: she wanted the Seconal because there is more experience with it in Washington and Oregon, and it felt like a “safer choice” to her because of that. But she did not want to pay Valeant, the manufacturer of Seconal, a price that seemed outrageous to her.
“I want to end my life”, she said, with a great deal of effort because talking was becoming more difficult as her condition progressed, “and its legal to do it now here.
But even though I think Medicaid will pay for the drug, no pharmacy will accept any insurance payments because there is such chaos currently about who pays and who doesn’t. I don’t want to support a company that is making such a profit on my death.” What should she do?

Best Practices for Advocates in End of Life Options: A good assessment considers, medical, psychological, social, legal, ethical, diversity, environmental, spiritual and financial concerns. Integrate them all.

next Post: Let’s Add in Hospice

Hitting the Wall

by Joanna Smith on Aug 12, 2014

I was in New York City recently and decided to ride my bicycle around the perimeter of Manhattan. There is a Greenway bike path, and I thought it would be a good city adventure. Off we started. The weather was great–not too hot, a light breeze. My bike was a borrowed commuter bike with a single gear. But Manhattan is pretty flat…, so it should be smooth sailing, right?
All went well as I circled south toward the foot of Manhattan. But then, as I rode up the east side of Manhattan, the route took some interesting twists…
Suddenly it would come to an end: with no warning, a fence would appears and the bike trail would stop suddenly with no warning or sign that a change was ahead. It forced us to change route and direction if we were going to get where we wanted to go.

It suddenly dawned on me that this is much the way health works for people: we are all going along on some kinds of trail and abruptly our clear path, our course, either stops or changes. It may be a new diagnosis, a change in condition, a side effect of a new medication. And suddenly the trail stops. What can we do at those times?

1. Change direction
2. Look for other route options
3. Ask for help from friends
4. Get another (medical) opinion
5. Make sure we are using all resources at hand

I am constantly amazed at how many people say they are reluctant to ask their physician for names for a second opinion for fear of offending them. If a healthcare provider is offended by that question, then they are not the right provider for you: better to find someone who is willing to help you get the information you need to help you start the trail again…….
BTW—Manhattan is 35 miles around the perimeter. The hardest part is getting past the George Washington Bridge….