This story is about my family’s experience with PAD (Physician Assisted Dying). Our hope is that it will be of some help to others following, or contemplating following, the same path.
In the fall of 2015 my brother, Curt, age 62, was diagnosed with incurable prostate cancer. He had been overseas for a number of years and by the time he came to us he was skin and bones, couldn’t walk, suffered from hallucinations and vision issues as well as bone and joint pain. The hospital doctors got him stabilized and resolved the hallucination and visions issues but held out no hope for curing the cancer. We were very lucky to secure him a bed at a hospice facility in a state in which PAD is legal. I cannot say enough about how wonderful and supportive they were to Curt and the rest of his family and we all feel a huge debt of gratitude for their efforts. I am not naming this facility or state because, although everything they did was perfectly legal and above board, the staff expressed a desire to fly under the radar regarding their participation in the process. This position reinforces the reality that PAD is still a very controversial endeavor politically, religiously, or otherwise.
Curt had been a very independent and self-driven individual all his life and his greatest fear was becoming completely bedridden and unable to perform even the most basic personal behaviors. Knowing that death was inevitable he asked his two brothers (me – Chris - and Cary) and their wives (Sharon and Cindy) to support him in pursuing obtaining permission from the state for PAD. It was his one way of feeling he had some individual control over both his life and death at a time when he was helpless in virtually every other area.
We succeeded in obtaining that permission and sometime later Curt announced that he wanted to follow through. In this state the medical department that oversees all hospice centers, takes a position of neutrality. They will assist in the paper work and the approval process and coordinate the prescribing of the drugs. They will provide, if wanted, a hospice nurse on site at the time of the event to witness and provide the certification of death. Due to their neutrality the event cannot take place in one of their facilities. It’s up to the family to make other arrangements. This begs the questions, “what if there is no family to step in and help?” and “what if the family is divided on the issue?” In such cases are the patients caught in the terrible limbo of wanting, needing to die and having no way to accomplish it?
My brother, Cary, and I, along with our spouses were unified in our desire to facilitate Curt’s wishes. We made arrangements for him to be released from hospice and we moved him to my brother’s home. We obtained a prescription for 100 Seconal tablets. Let me explain that Curt was living on social security and being supported medically by Medicaid at the time. Since Medicaid does not support PAD we knew we would have to pay the full cost of the drugs out of pocket. The cost was $3500.00, which we thought was outrageous. A doctor friend of mine did some research and said that even without prescription drug coverage it should have been less than $1000.00. This is not a particularly sophisticated drug and has been around for years. Why the extra cost? The answer is “because they can”. Shame on the pharmaceutical companies and our medical system that allows this. Luckily, we were in a position to swing the cost. Many other people wouldn’t be. Then what? More than likely we could have obtained the drugs on the street for less. There’s something wrong with that picture.
We had a last nice dinner with Curt knowing that the next day he would consume the drugs and die. How can I describe the anxiety of waiting and knowing what would happen the following day? What time of day would we do it? We needed to plan ahead so the hospice nurse could be available both in case something went wrong as well as to witness and pronounce death. None of us wanted to pressure Curt into deciding on a specific time. But Curt, bless his courageous soul, announced that we should plan on 5:00 pm that day.
Hospice had provided us with very specific instructions for the administration of the drug and what to expect following his ingestion of it. We were to administer anti-nausea medicine one hour prior to taking the drug to prevent him vomiting it up. We did so. We were instructed to empty the Seconal capsules into enough water to make a drink the consistency of a slushie. We did so. We were told he must consume it all in a couple of minutes or he might become too drowsy to drink all of it and it was very important that all of it be taken. We could expect that within a few minutes he would become unconscious and that death would occur between one and five hours thereafter.
We all gathered around Curt saying goodbye and holding him. As Sharon put it you could cut the love in the room with a knife. Curt downed the liquid though it was a struggle because of his weakened condition and because it was so bitter and awful tasting. Within a couple of minutes he went into a coma. We stretched him out on his bed and proceeded to cope with the event each in our own way. Some of us kept it light and chatted. Some (me) went into a shell. I know we all cried.
The five hours we were told was the longest time to expect came and went. Worries crept in. What if he woke up? What condition would he be in? The nurse consulted by phone with the doctor. They were clearly at a loss and in uncharted waters. It was decided that hospice would officially take over at that point. We were told to crush up an Ativan tablet into a small amount of liquid morphine and put it into his mouth every hour. His mucous membranes would absorb it and hopefully keep him under until he died (or didn’t....none of us knew what to expect). All night long we kept up the vigil with nobody getting much sleep.
Time continued on and on. I know I began having all sorts of thoughts. What if subconsciously he had changed his mind and was fighting to live? Or was it that, as the nurse put it, his reptilian autonomous system acting on instinct? What if the drug was old and not as potent as it should have been? The not knowing was the worst.
Finally, twenty three hours after taking the drug he quietly stopped breathing. For a time, I think, the sense of pure relief overshadowed the sense of loss.
The next day Sharon, Cindy, Cary, and I spent the day together before Sharon and I had to fly home. We didn’t talk a whole lot about the experience. We were all in processing mode. In addition to the feelings of grief you might expect, one of my overriding feelings was frustration and, to a certain extent, anger that the whole process couldn’t have been done more humanely both for Curt and his family. In this day and age of modern medicine, using a decades-old barbiturate, making him drink the noxious substance, and making us all go through the waiting period just seems so uncaring and pointless. There’s got to be a better way. It’s pure politics that there isn’t. It seems to me that if it’s legal there should be no roadblocks to finding the safest, quickest, and most humane method for administering PAD. If you were a death row inmate you’d likely have an easier time than Curt.
Now that some time has passed I find myself searching for the good in all this. I think about how truly alone Curt had to feel to be facing certain death....not at some unknown time in the distant future but at five o’clock on a particular Saturday. Leading up to this event I think Curt felt we loved him in some sort of abstract way but maybe not deep down in his soul where certainty lives. By the time he drank the hemlock I think he knew he was truly loved and would be sorely missed. Perhaps giving this gift to someone nearing death is the best thing we can do and in so doing we feel it in our own hearts as well.
I want to make it clear that not everyone has as rough a time of it as we did. Many times things go off without a hitch. This is a pretty grim story but, as painful as it was, we’re happy we helped Curt along. So if you have a loved one who is of sound mind and wants to explore PAD I would encourage you to keep an open mind. If your initial reaction is to resist, ask yourself if you are willing to accept some personal discomfort and angst in order to support your loved one. I’m told that oftentimes people go through the protocol of getting permission and don’t, in the end, actually do it. Just knowing they can offers some comfort in having some power over their life and death. By all means talk to your hospice staff, friends, family, spiritual advisor or whomever you look to for advice.
PAD is obviously only appropriate in certain dire circumstances and only then after the process has been fully understood and accepted by those involved. That said, it is my hope that the process can come out from behind the woodwork and be looked at as a potentially wonderful and liberating alternative to a slow and agonizing death. Only when it does will more reliable methodologies become available.
If you’ve read this story and would like to communicate with us please feel free to share your thoughts, comments, and questions with us at firstname.lastname@example.org. You may get a response from any one or all of us. We each have our own perspective and insight. That may prove valuable.
Written by Chris, with the consent and help of Cary, Cindy, Sharon, Will, Debbie, and Katy