Professional Advice What Was the Role of Project Nightlight During the AIDS Crisis And What Has Its Founder Been Up To Since?

An Interview with Cassandra Christensen
Project Nightlight worked with AIDS patients who were dying

Project Nighlight
Credit: Scpr.org

Today SevenPonds speaks with Cassandra Christensen, a retired R.N. who discovered her life’s mission was to work with people facing the end of life.  After working as a staff nurse at UCLA, Cassandra transitioned into private duty nursing.  It was at that point in her life that a chance encounter with Mother Theresa catalyzed Cassandra’s work with AIDS patients.  With the help of Marianne Williamson, she founded Project Nightlight, through which they trained thousands of volunteers to go into the community and provide emotional support for those dying of AIDS. Decades later, Cassandra teaches workshops and trains people how to be with the dying.  

Ellary: Cassandra! Thank you so much for taking the time to chat with SevenPonds. Could you start with a little bit about your background?

Cassandra: I’m a retired R.N., and I worked at UCLA medical center for a number of years in the late 60s and early 70s. While I was working there, the head nurse would always assign me to patients who were dying.  She just thought I was really good with dying people. After working there, I went back to school and got my bachelor’s degree in psychology and started writing and giving talks on how to “be there” for the dying — how to be a midwife to the dying. I lived in New York, and the AIDS crisis was going on at the time. I did home care with AIDS patients, and then I moved back to LA and did home care with AIDS patients here.

Ellary: What was it about your disposition or orientation that made you good with dying people do you think?

Cassandra: Well, I love hearing stories. And, I know it probably doesn’t sound good when I say it, but I love to be with people when they’re in crisis. I just think that everything’s real then. The heart’s wide open, and it’s almost the most sacred time of life. I like to be with families, gathering families together and finding out what they wanted for the person. Sometimes families have great schisms and rupturing of relationships, and everyone’s on a different page. I just love the whole process of being with people and sorting things out when they’re really close to dying. I also love teaching people, inspiring other people to be there with the dying. I’ve been doing a lot of teaching and support groups in the past few years.

Ellary: I know it was Mother Theresa who encouraged you to work with AIDS patients. At what period in your life were you when you ran into her and how did that encounter happen?

Cassandra. Well, in the 70s I knew someone who was the casting director for “The Dating Game,” which was a lot like “The Bachelor” but simpler. She asked me if I’d like to be a chaperone for “The Dating Game.” My job as a chaperone was to take the winning couples all over the world. So, I took this couple by the name of Theresa and Kevin to Bermuda. And on our way back from Bermuda we were running to catch the plane because we were late. We were running through the concourse and I lost them and started calling out, “Theresa! Theresa!” And who turned around but Mother Theresa! She was surrounded by a bevy of nuns and I went up and took her hand and shook it up and down saying, “Oh, Mother Theresa, I’m Cassandra and I do the same work as you!” Meanwhile, the other part of me is thinking to myself, “Are you kidding? You don’t take anybody in off the streets of Calcutta! And you’re a groupie for God’s sakes!”

Anyway, I finally caught up with the couple, Theresa and Kevin, and put them on the plane. Then I went back to the concourse and talked with Mother Theresa, who was at that point sitting with the other nuns in a semi-circle. She said, “So, tell me what you do.” And I said, “Well, I’m there for people when they’re really close to the end of life.” And she said, “Do you work with AIDS patients?” I went, well,  kind of…” It really wasn’t true. In fact, I was running a cable TV show where I’d invite families on to interview them about being with their dying loved ones. I’d had one moving experience interviewing a couple who’d had a profound experience with their son who was dying of AIDS. That was really all I did.

I was kind of homophobic at the time. I didn’t figure out that I was gay until 10 years later when I fell in love with a woman and figured out why my previous marriages to men hadn’t worked out!

Anyway, Mother Theresa responded by saying, “You, you work with AIDS patients!” So I came back to LA.  Then Marianne Williamson, who had heard about my Mother Theresa story, said, “I”ll help you do the work.” So we created a space for people with AIDS to hang out at the LA Center for Living, which helps people with life-threatening illnesses. And from there I developed my non-profit, Project Nightlight. For a number of years, we trained volunteers to go out in the middle of the night to hold people with AIDS in their arms, when not even the parents were willing to be there. That was true in a lot of cases. Parents refused to be there, and their sons were dying alone.

Mother Teresa and Cassandra Christensen talk about AIDS

Cassandra and Mother Teresa
Credit: scpr.org

Ellary: You said you were dealing with some internalized homophobia prior to coming out yourself. But after your talk with Mother Theresa, your focus became working with gay men dying of AIDS. What shifted for you?

Cassandra: Before I met Mother Theresa, I felt that nurses should be paid extra to work with AIDS patients. So I was kind of cold-hearted. But actually, just being with her caused me to shift. I wasn’t like that ever again. And, of course, eventually, it became very obvious to me that I was gay.

When I started working with AIDS patients, I discovered that I loved providing support for these men. Their hearts were so open. There was a huge shift in how we were with patients because of the AIDS crisis. Volunteers would get in bed with patients and hold them while they were dying. There was so much love. It was just amazing to be there for that. At that time I was teaching and training and supporting rather than going out in the night to do the direct work. Marianne got huge numbers of volunteers to go out and do that. Project Nightlight was under an umbrella with Project Angel Food, a non-profit she developed that goes out to deliver food to people with life-threatening illnesses. During the AIDS crisis, Project Angel Food focused on providing meals for people dying of AIDS.

Ellary: What followed Project Nightlight for you?

Cassandra: Well, about three years ago that I realized that I was an alcoholic and joined AA. I started going to the Unitarian Church. Both of them had the same goals: love and service. It inspired me to return to this. I ran an almost year-long program on death at the church. We met from two to four or five times a month and dealt with all kinds of aspects of the dying process. So it helped get me back into giving talks and workshops and finishing up my book.

Ellary: What’s your book about?

Cassandra: It’s a little handbook that talks about very specific things regarding how to be with dying people. Tell them they’re loved and dear, maybe even get into bed and hold them; sing songs; read poetry. You know, I didn’t mention one important thing regarding how I transitioned into working with dying people, before Mother Theresa. Would you like me to tell you?

Ellary: Please!

Cassandra: I’d just gotten divorced from my second husband and I was on my way to Tahiti. I was on the plane going over the ocean. Everyone on the plane was asleep and I was looking out the window. And I said to God: “God, you give me a mission. I’m not a very good nurse. My daughter doesn’t think I’m much of a mother. I’ve been divorced twice. (Remember, I didn’t know I was gay at the time.) Give me a mission here so when I come home you’ll say, ‘Job well done, Cassandra.’”

Within two months I was doing private duty nursing for people dying at home. Carlene, who was dying of cancer, said to me, “When it gets close, will you be there to talk me through it?” So when she was dying and unresponsive, I told her, “This is it, Carlene. I’m going to talk you through it.” Her husband and her daughter gathered around. We put on some music, and when the cassette snapped off within the hour, she had died. We just told her how loved she was. She had abandoned her son when he was really young, and I told her, “You know, Carlene, you’re forgiven. You just did a good job living your life.” At one point she even gave a tiny smile.

When she died I went into the other room to let the family be with the body, and I thought, “My gosh! This is the answer to what I asked God for. This is my mission. I do it well; I love doing it, and this is what families need. They need this.” Now, of course, there are a lot of people doing this kind of thing, who act as death midwives. I think we need midwives to help families. To tell them things like, “Yes you can touch, just be gentle. Yes, you can talk with them, just be gentle.”

Ellary: When you were talking Carlene through her dying process, you told her that she was forgiven and you told her that she was loved. Is there anything else that you really try to convey when you’re talking someone through the dying process?

Cassandra: Yes. For her, I put on a tape of some chanting that meant a lot to her spiritually (you know, it was the 70s) and put the tape by her ear. And I told her, “You’re safe and you’re loved. You did a good job living your life.” I said a lot of words over and over. Her daughter held her hand and touched her hair, and her husband touched her feet. Usually, I try to involve the family more. But in this case, Carlene had specifically asked me to talk her through it, so I focused on doing that. Do you want to hear another story?

Do you want to hear another story?

Ellary: I’d love to hear it.

Cassandra: One of our Project Nightlight volunteers was straight. Usually, our volunteers were parents or sisters of AIDS patients, or they were gay. This volunteer was straight and he’d been called down to Harbor UCLA Hospital to see a patient. He was walking down the hall and before he got to the patient, he heard a voice calling, “Dad! Where are you, Dad?” So he thought he’d go into the room. I’d taught the volunteers to go in really slowly and delicately and get in touch with what feels right. And he felt that it was right to go in.

He said to the patient, “I’m here.” The young man was so close to dying that he just said, “Oh Dad, oh Dad.” Andrew just talked to him as if he was this young man’s father, saying things like, “I’m sorry I couldn’t have been a better dad, I love you.” The nurse came in and just nodded. It was clear Andrew wasn’t this patients’ dad, because he was too young. And then the young man died. Andrew said he was so glad the nurse came in to see what he was seeing and validate that it seemed like the right thing to do.

I’ll tell you one more story if you’d like.

Ellary: Please!

Cassandra: There was one volunteer named Harley that called me up and said, “Cassandra, my dad’s dying. He called me from the VA up in Oregon. He was a terrible drunk and he abused and abandoned all of us, and I don’t know what to do.” So we talked about some of the things he had learned, and he went up there.

But he couldn’t say “I love you.” He just couldn’t. So what he did was help the nurse care for his father. He helped bathe and turn him,  helped make the bed, and just stayed with him. So here’s this guy whose kidneys had totally shut down. And what happened? He survived. He came out of it. Harley had come back to A, and got a phone call from the doctors saying, “We don’t know what happened, but your father’s recovering.” I think he recovered just enough to go back to the streets and start drinking again. But regardless, it just shows the power of being there with so much love. And that you don’t have to say anything you don’t feel.

Ellary: Thank you SO much for sharing these stories with me. I want to ask you, is there anyone in your life that you’d want to have talk you through your own dying process?

Cassandra: I’ve thought about that. I think we’re all so different, and we’re also different than we think we’re going to be. I will say that when I’ve had procedures, like a colonoscopy I had without anesthesia, it helped me so much when that nurse held my hand. So I imagined it would be the same, that it wouldn’t make too much difference who specifically was there. And then some people, they need to die without being touched and without being spoken to. Quietly, like they’re going to sleep.

Ellary: Cassandra, thank you so much for speaking with SevenPonds. It was really an honor to hear your stories.

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New Quality Measures for Nursing Homes Give Patients Better Information

The five new qualities will change overall nursing home ratings
Three nursing home patients sit at a table and enjoy a meal

Credit: Flickr.com

For years now, the Five Star Quality Ratings system has helped patients and their families compare nursing homes to find the best fit. This year, that rating system has expanded to include five more quality measures, giving patients an even clearer picture of which nursing homes offer the highest level of care.

The Centers for Medicare and Medicaid Services came up with the system to ensure that nursing home patients received the best care. The center rates every nursing home on a 1 to 5 scale, with 5 being the highest score. It also hires health inspectors to rate each nursing home on the list and verify that they’re compliant with quality standards.

In August 2016, CMS expanded its official rating system to include five more quality measures in an effort to make the list more accurate. These include:

Number of Short-Stay Residents Who Return to the Hospital 

The percentage of patients who return to the hospital after staying in the nursing facility now helps to determine the facility’s overall score. If this percentage is high, the facility will receive a lower score.

Number of Patients Who Experienced Improved Locomotion 

If a nursing facility has a high number of patients who experience an improvement in their physical mobility, the facility receives a higher rating.

Number of Patients Whose Locomotion Worsened 

Nursing homes with a high number of patients who experienced worsened physical ability receive lower overall ratings. This quality measures how well the nursing facility encourages patients to move independently.

Number of Patients Who Have Outpatient Emergency Room Visits

A high number of ER visits will lower the nursing home’s rating.

Number of Patients Who Were Successfully Discharged

If the patient successfully leaves the nursing facility and doesn’t come back for at least 30 days, the nursing home receives a higher score.

As CMS notes, this list of quality measures is still incomplete. Officials continue to find new methods for rating nursing homes, and this list will likely expand over the next few years.

A man in a nursing home sits in a wheelchair and speaks with a member of the US Navy

Credit: Wikimedia.org

In addition, these numbers don’t always give patients and their families an accurate sense of which facility is right for them. For example, a nursing home might get a higher number of high-risk patients than other similar facilities. As a result, its hospital re-admission percentages may increase due to no fault of its own.

It’s also possible that a nursing home with a lower score is still the best fit for certain patients. A relatively healthy patient might choose a 3-star-rated facility that’s closer to relatives rather than the 5-star-rated facility 30 miles away. The best nursing home depends on a number of factors that CMS currently doesn’t cover in its guidelines.

Still, as CMS continues to expand the list, it will remain an essential tool for patients who aren’t sure which nursing home is best for them. The 5-star-rating is an excellent place to start because it allows patients to narrow their search down to facilities that other medical professionals trust. Patients and their families will still need to consider their individual needs.

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Book Review: “The Purple Balloon” by Chris Raschka

How to talk to children about death.

purple balloon, books for children about death, how to talk to children about death, explaining death too children, how to talk to kids about death

Talking about dying is hard.

Dying is harder.

But there are many people who can help.

-from “The Purple Balloon”

 

Created in conjunction with Children’s Hospice International, “The Purple Balloon” by Chris Raschka offers a way for parents, families, friends, and hospital workers to explain death to a child.

This simple children’s book is based on a fascinating anecdote shared at the beginning of the book:

“When a child becomes aware of his or her pending death and is given the opportunity to “draw your feelings,” he or she will often draw a blue or purple balloon, released and floating free. Health care professionals have discovered that this is true regardless of a child’s cultural or religious background, and researchers believe that it demonstrates the child’s innate knowledge that a part of him or her will live forever.”

Illustrated by Raschka with simple watercolor balloon characters, “The Purple Balloon” encourages kids to be there for terminally-ill friends and classmates and to seek help and companionship from loved ones if they are ill. The brief text shares the basic message that there is no “right” way to grieve or to approach the end-of-life. Yet it makes clear that pain is always a  little easier to bear if we reach out for help from friends and loved ones.

dying child

Credit: healthline.com

The book closes with a short list for kids, “What you can do to help” when a friend is sick or in the hospital.

“The Purple Balloon” addresses an important need — a way to open conversations about death with grieving or dying children. While these conversations are never easy, books like this make the subject of death approachable with even very young kids.

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Blurring the Line Between Life and Death

Science and technology are changing Western culture's perspective on death

It wasn’t very long ago that no one questioned the finality of death. A person died when they were no longer breathing and their heart stopped beating — period. There was no such thing as CPR, and mechanical ventilators didn’t exist. Even large, well-equipped hospitals did not have intensive care units, and virtually 100 percent of patients who suffered a cardiac arrest outside of an operating room, where doctors occasionally performed “open” heart massage, died.

A person performing CPR blurs the line between life and death

Credit:startcpr1st.com

Then, in 1956, Peter Safar and James Elam invented mouth-to-mouth resuscitation. And in 1960, the American Heart Association officially introduced the practice of CPR. A few years later, in 1967, Dr. James Bedford, a professor at the University of California, became the first human to be cryonically preserved in a steel capsule with liquid nitrogen. With these three events, the “hard stop” between life and death was forever altered. And our cultural perspective of what is means to be “dead” began to evolve.

Today, technological advancements have further blurred, and in some cases erased, the line between life and death. Patients with a heartbeat but no evidence of brain function can be kept alive indefinitely with the aid of a mechanical ventilator and feedings given through a stomach tube. And hundreds of people have been successfully resuscitated — brought back after minutes and, in rare cases, hours of “death.” One example: Gardell Martin, a three-year-old boy who drowned in an icy stream, was “dead” for 101 minutes while receiving CPR. Shortly before doctors were about to give up, his heart began beating again. He went home from the hospital three days later — fully recovered and neurologically intact. (Submersion in cold water can sometimes stimulate the “diving reflex,” which slows bodily functions to a near-standstill to minimize the need for oxygen.)

Gardell martin blurred the line between life and death

Gardell Martin was successfully resuscitated after being dead for over and hour and a half
Credit: globalnews.ca

What’s more, researchers continue to delve into new ways to blur the line between life and death. In Seattle, Washington, biologist Mark Roth is putting animals into a state of suspended animation using chemicals that slow their metabolism to a crawl. He eventually hopes to use the same process on humans who are having a heart attack so doctors have time to repair the defect and restart the heart. Similar studies are going on with human subjects in Baltimore and Pittsburgh, where trauma surgeon Sam Tisherman is conducting clinical trials on victims of stabbings and gunshot wounds. But instead of using chemicals, Tisherman and his team are supercooling the bodies of mortally wounded patients to give surgeons time to close their wounds before they bleed to death.

Meanwhile, in Arizona, the Alcor Life Extension Foundation claims to have developed a new form of cryonic preservation called vitrification that preserves tissues that have been cooled to temperatures of minus 120 degrees Centigrade. The process uses chemicals that prevent the formation of ice, thus keeping the structure of the cells intact. Alcor claims the process protects the structure of organs as large and complex as the brain. (Alcor can’t say whether it preserves function yet.) To date, Alcor has preserved over 100 bodies and has applications on file from 100s more.

Progress or Fantasy? 

Still, the question remains: Is modern society’s preoccupation with postponing and, perhaps, eliminating death a good thing? Are we moving forward into a brighter future or deepening a culture of death avoidance that makes it difficult for us to embrace dying as a part of life? Is life-extending technology a miracle, as some would claim? Or is it just another way to extend the process of dying, putting patients on what ICU physician Dr. Jessica Zitter aptly calls the “end-of-life conveyor belt.”

Cryopreservation tanks blur line between life and death

Cryopreservation tanks
Credit: farodiorama.it

For Gardell Martin and others like him, the answer is clear. Modern science pulled off a “miracle,” and because of that miracle, a young boy is alive and well. But for every “miracle” there are hundreds of tragedies — people who survive CPR only to stay in an artificially maintained limbo between life and death until some untoward event brings their suffering to an end. And the promise of cryopreservation is just that — a promise, and an incredibly costly one at that. 

The answer to this incredibly complex question is not at all clear. There’s no doubt that advances in medicine and technology will continue. And the work of researchers like Dr. Roth and Dr. Tisherman will help some people who would otherwise have died to live long, productive lives. But I can’t help but wonder if our society could find better ways to use our limited resources than by constantly trying to perpetuate the myth of eternal life.

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New Report Shows Benefits of Integrative Therapies For Breast Cancer Patients

Meditation and yoga received the highest grades for improving wellness

The Society for Integrative Oncology has released new guidelines regarding effective and safe integrative treatments for people with breast cancer.

The new review adds to the growing body of evidence that supports the use of integrative therapies for breast cancer patients. The latest results appear in the journal CA: A Cancer Journal for Clinicians.

The authors of the study make a few distinctions at the beginning of the report. They define complementary and alternative therapies as “any medical system, practice, or product that is not part of conventional medical care.” In the oncology setting, patients use these therapies to improve quality of life, relieve symptoms of the disease, minimize side effects of treatment and more.Woman practicing yoga on a beach uses integrative therapies

“Studies show that up to 80 percent of people with a history of cancer use one or more complementary and integrative therapies, but until recently, evidence supporting the use of many of these therapies had been limited,” said Heather Greenlee, N.D., Ph.D., assistant professor of Epidemiology at Columbia University’s Mailman School of Public Health, and past president of SIO.

The researchers (from a variety of institutions) studied more than 80 different therapies and assigned each therapy a letter grade. For example, a letter grade of “A” means the research supports the use of certain therapy for a specific clinical indication.

Some highlights of the new SIO recommendations include:

-Music therapy, meditation, stress management and yoga for anxiety and stress reduction
-Meditation, relaxation, yoga, massage and music therapy for depression and mood disorders
-Meditation and yoga to improve quality of life
-Acupressure and acupuncture for reducing chemotherapy-induced nausea and vomiting

Meditation has the strongest evidence supporting its use. The researchers recommended it for alleviating depression symptoms, reducing anxiety and improving quality of life. Music therapy, massage and yoga received “B” grades for the same symptoms.

“The routine use of yoga, meditation, relaxation techniques, and passive music therapy to address common mental health concerns among patients with breast cancer is supported by high levels of evidence,” said Debu Tripathy, M.D., chair of Breast Oncology at the University of Texas MD Anderson Cancer Center, and a past president of SIO.Woman meditating near lake part of integrative therapies

Researchers noted that clinicians and patients should exercise caution regarding the use of therapies that received “C” or “D” grades. Lynda Balneaves, R.N., Ph.D. and president-elect of SIO, warns that patients should “fully understand the potential risks of not using a conventional therapy that may effectively treat cancer or help manage side effects associated with cancer treatment.”

Further Research Needed

The new findings are by no means definitive. The authors of the study note that their results should ignite more research regarding integrative therapies.

“Patients are using many forms of integrative therapies with little or no supporting evidence and that remain understudied,” noted Dr. Greenlee. “This paper serves as a call for further research to support patients and healthcare providers in making more informed decisions that achieve meaningful clinical results and avoid harm.”

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“How can the dead be truly dead when they still live in the souls of those who are left behind?”

- Carson McCullers
Jesse Jackson and his family visit Gandhi's grave as a memorial to his life

Credit: Wikimedia.org

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