Journey of the End of a Lifetime: Gently and With Laughter

by Joanna Smith on Jul 25, 2016

I was the first to arrive at P.S.’s house that morning, and talked with her Mom first. I then sat with P.S. and talked again about whether she felt sure she wanted this to be the day of her death. She said unequivocally “I’m ready. I’ve said my goodbyes and I’m ready to go.” She had had trouble swallowing some coffee this morning and was concerned she would not be able to swallow the medicine. I told her I was letting the doctor know this by text since he was on his way, and he would talk with her about this when he arrived. Thin liquids are harder to swallow than thicker ones, and most people do not realize this. The compounded “cocktail” medication, which she and I looked at in its bottle, was thicker than coffee, so she was reassured…

Her children arrived next and then the physician, followed by the nurse and the social worker from Hospice.
The physician very carefully went over her concerns about swallowing from the morning and reassured her that, based on his assessment, he felt that she would be able to do it. We experimented with how the medication would be taken, and ended up putting a straw in the bottle itself and putting the bottle in a cereal bowl, filled with black-eyed peas to stabilize the bottle since P.S. could not hold the bottle herself and by law the family cannot assist her. The physician went over the time lines for the medications and again talked with P.S. about whether she was ready. Forming words was becoming more difficult for her this week, but she carefully and laboriously said that she understood what she was doing and wanted to go through with it.

“Any music you would like to have playing?” the physician asked. She had a particular CD she had made, and her children found it and put it on. The music filled the room and she and her family laughed at some imperfections they heard in the playing……

The Process: first, Anti-nausea medications, then a medication to slow her heart and, finally, the cocktail. The nurse was able to grind the anti-nausea pills into powder (two spoons, nesting together, still make a perfect grinder) and P.S.’s Mom mixed them with pear sauce. P.S. was able to take them easily. Now the medication to slow her heart–“the point”, as the physician said “of no return. Once you take this, you will take the cocktail within 5 minutes.” P.S. took it with pear sauce and actually licked the spoon. We all laughed.

Five minutes later she took the cocktail. We could see from the monitor on her finger that her oxygen level fell immediately. She was able to tell us that the mixture wasn’t bitter on her tongue, because she had used a straw, but that it burned in the back of her throat. What a gift that will be for the future: pharmacists can keep working on the cocktail to improve it (or change it) so that the final taste experience of a lifetime is not a burning sensation…..
In four minutes she fell asleep.
In fifteen minutes she had died.
Gently, peacefully, quietly.
The end of the journey of the end of her lifetime.

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.
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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: 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

Journey of the End of a Lifetime

by Joanna Smith on Jul 19, 2016

This is a blog about the end of a life, an option possible because of the newly established California End of Life Option Act.

I Can’t Do What I Want To Do Anymore
I first met PS when she was in a nursing home after a hospital stay. I had been contacted by a physician who had an End of Life Options Practice where he assisted people at looking at all of their end of life options: Palliative Care, Hospice and Aid in Dying.

PS was 65, depleted after a chaotic stay in the hospital and a discharge to the nursing home for rehab “to help her get strong again”. Her speech was slowed by her cerebellar ataxia, but her intent was clear: “I can no longer do the things I want to do; I can no longer be spontaneous; I can’t walk with my walker and I’m not getting stronger from rehab. I want to pursue my option to end my life and take the medication so I can die with dignity.”

I had had to think long and hard before I had decided I could work with her. I teach and credential people who want to become advocates: could I offer her the open support and good boundaries this process required? This would be her own death, and my work was to help her have as easy a process as possible. No room here for doubts on my part or counter-transference. Could I support her one thousand percent in her quest? Because if I could not, I had no business being an advocate on her behalf. At this point, she needed people who were complete in their support of her wishes.

I had decided that I was one of those people–took a deep breath–and stepped forward to help her create the kind of death she wanted.

First Best Practice for Advocates Working With Aid-In-Dying clients: Know Thyself. Very well.