Stephanie Packer’s lungs are hardening, but she has not lost her voice.

The 37-year-old Catholic mother of four living in Orange County, California, has outlived her prognosis of terminal scleroderma by five years. She has just outlived California’s assisted-suicide law, and her health insurer’s subsequent offer to end her life with a $1.20 copay, by three years.

Packer spoke with Register staff writer Peter Jesserer Smith after California’s appellate court declined to block a state judge’s ruling May 15 that the state Legislature improperly legalized assisted suicide in a special session in 2015 meant to address a Medicaid funding shortfall.

Packer supported the efforts of Life Legal Defense Foundation attorneys over the past three years to challenge the End of Life Option Act, which became void May 25. The legal battle is not over, however, and is expected to reach the California Supreme Court.

The Catholic woman wants people to know assisted suicide devalues the lives of people who are approaching the end of life. She said what people with terminal illnesses and their caregivers need are society’s compassion and loving holistic support. They do not need “aid in dying,” but “aid in living,” and they can teach important lessons to those who accompany them to the end.

 

Stephanie, when the judge struck down the End of Life Option Act, you were there in the courtroom. What was it like to be there, hearing the decision, as a Catholic mother with a terminal illness?

At first, I wasn’t planning to be there. We expected the attorney general [Xavier Becerra] would request another continuance to drag it out more. I only went to put a face to the name, as the attorneys would be referring regularly to my story. I had to take my two youngest with me.

The judge stopped [oral discussions] at one point and started reading. The attorneys around me had strange looks on their faces. I could hear whispering. Two minutes into it, and I realized, “Oh, my gosh! This is a judgment!”

He wasn’t taking questions or anything. I didn’t know what to do with that. We went out into the hallway. One attorney was crying and so excited. My son realized before I did what had happened and was jumping up and down, “Let me call Scarlett [his sister]!”

I don’t think I got the full impact of the decision until the next day. And my son was still jumping around saying, “Mom we won!” It was a win we really needed: emotionally, spiritually, physically, psychologically, etc.

 

How did you get involved in this movement to fight assisted suicide in California?

I first heard about it when the pastor at my church was speaking and reading a letter from the bishop [Kevin Vann] telling us what was going on and reminding us it was our obligation to stand up and speak against things that are wrong. I had never heard of it before. I didn’t know anything about Brittany Maynard. We got in the car after church, and I was talking to my husband and kids, when my eldest daughter [Scarlett] just flipped out on me. She thought I was talking about utilizing these [assisted-suicide] drugs, and I said, “No, no! I’m talking about speaking out against it.”

And I said I would go to the bishop’s office tomorrow.

 You also had a meeting with the Archdiocese of Los Angeles.

Yes, I told everyone: “I’m not sure what I’m doing here, but I don’t agree with this. This is what’s going on in my life. What can I do?” because you can only do so much on Facebook. So they set up speaking arrangements for me, and it just took off. And my daughter started getting involved, and then things got so much more powerful.

 

When you decided to get involved, how long had you known about your terminal diagnosis for scleroderma?

Two years.

 

How long did the doctors give you when you were diagnosed?

At first, they gave me three years. This was at the beginning of April 2012. They told me three years, and I didn’t quite believe it at first. I did my own research, trying not to take their word for it, but it was pretty quick finding out what is going on [with scleroderma], how it’s treated, what your prognosis is.

 

You have been facing a great deal of health complications and family crises, along with terminal illness. Why is speaking on assisted suicide so important to you?

It’s where my heart is. I can still help by sharing. It’d be great if I changed everyone’s mind. But the purpose isn’t changing everybody’s mind; it’s to tell what’s going on … to tell everyone the truth on this, and then take your vote and go vote.

 

You have lived the effects of the assisted-suicide law personally. You asked the insurance company if they would pay for a particular form of chemotherapy to treat scleroderma. They said no. Then you asked about assisted-suicide drugs, correct?

Yes, my doctors were appealing the insurance company’s decision to not pay for this [chemotherapy] medication. We finally got it all set up — we were excited — then we got a notice it was no longer going to be covered. And there was no information! No one said why.

So I called and asked: “What’s going on? If you’re going to take this option away from me, what do I have left? What do you suggest I do?” The lady on the phone, she was just doing her job, poor thing. And she said, “I can’t tell you what to do. I can just tell you what will be covered.” So I asked about the assisted-suicide drugs, and she seemed to have no idea what that even was. So I specifically asked about the different medications that can be used for this. I wanted to know if that would be covered for me, when this other [one] wasn’t. She put me on hold a little while and came back and said, “Yes, they would cover that medication for me.” I could get it as long as I paid my copay.

 I asked how much that would be, and she said $1.20. Let me tell you about taking a blow to the gut.

It’s shocking: We put so little value on human life. And it’s so sad to see that happening. Too many people are not looking for the resources they need. And now we have all these healthy people putting in all this work, and time, and energy trying to get this [assisted-suicide law] to pass. Could you imagine how much we could educate patients and doctors, if we would put even a portion of that money and energy into education, instead of saying, “Let’s just kill you and save that money”?

 

More Catholics are championing the idea we don’t need “aid in dying,” the euphemism for assisted suicide, but we need “aid in living,” or holistic support for persons with terminal illness and their caregivers. What do you think of this?

It’s exactly what should happen! Again, there’s a lack of public education. There are so many organizations where all they do is provide someone with a partner [to offer support]. If you don’t have family, or significant others, that doesn’t mean you aren’t going to have someone with you. There are all these groups of people just waiting to be used somewhere.

To walk with someone during that part of their journey — it is such an honor you could have. Just to sit with someone and listen to all of these things: There are lessons you can learn, even though they were in the past, that have all-new meaning now.

And it’s beautiful. But once we start telling people they don’t have worth, that once they become sick, they don’t have a purpose and can’t contribute anything … it’s sad we do that. It’s completely opposite of who we are as humans, as friends, as neighbors. I just don’t understand.

 

In your own personal experience, support groups are highly important. What is it like when a person learns he or she is terminally ill?

Initially, whatever the disease is in my support group, when we have new patients, I’ll call them and talk to them about the basics of the disease. I tell them this is what’s going on, and I know this is scary. With a rare disease, it’s hard to find accurate information.

Initially, people are going to be overwhelmed. It’s a grieving process. It’s a death of who they thought they were: many times their goals in life, what they hoped to achieve. ... It’s a rude awakening to find out you’re not going to be able to do those things, no matter how hard you try, or how badly you want something. Once you receive that prognosis, everything stops.

That’s really hard. New limitations are really the most difficult part for me … wanting to be part of something, but your own body fights against you.

 

How do you intend to spend the rest of the life God has given you?

It is really important to me to leave a legacy for my kids — one they can be proud of, too. There is so much beauty in this world, and we move way too fast for it; everyday we’re missing it. I appreciate everything God has given me, and I want to experience life with my kids as a gift we can take in and appreciate all the things around us. It is very hard to slow down. … I hope that, as my illness declines, and different things happen, I intend to leave my kids knowing we embraced life, and we embraced love: love of family and of friends, and all these things. And I won’t regret any of it. …

I regret choosing to, you know, clean my house all day long instead of playing with my kids. And I really just hope I can just keep my sight on what God wants: who he wants me to be. He gave me this opportunity and responsibility to be a mother to these four kids, and the way I live the end of my life is directly going to affect how they live their future life. And I’m accountable for that and how they see the world.

Once you decide not to be consumed by the illness, you can find joy. I get knocked all the time because I’m smiling — all the time. People say some of the most horrible, hateful things because I’m smiling: like I must not know what pain is, because if I did know what pain is, I would want people to have the ability to kill themselves, or if I were in pain, I would be upset, depressed, angry, and all these things that we all go through in phases.

But that’s not what God wants for us. He wants you to embrace who you are and who he wants you to be in this moment and go from there. And that’s exciting! It makes me want to open up my eyes in the morning, because I want to see what God is going to do next in my life, the lives of my kids and in the world around me.