Seasons Hospice Featured in Ami Magazine
Tova Jussim, LCSW-C, clinical social worker at Seasons Hospice & Palliative Care of Maryland, sits down with Ami Magazine, an internationally distributed Jewish Magazine, and discusses hospice and Jewish end-of-life issues.
In your work in a hospice, what kind of conversations do you encourage your patients and their families to have?
There are a hundred conversations that are important: end-of-life care, postmortem arrangements, the legacy they wish to leave and resolving unfinished relationship issues, to name a few.
The first thing I do is try to help a patient determine her wishes. I had a client who was advised to move into an assisted living residence. Her doctor was worried about her safety. Although I agreed that it wasn’t ideal for her to live at home because she’d become quite frail, she was still oriented, and I advocated for her to remain in her house because it was her lifeblood. To her, life meant living in her home. Although she’d be physically safer in an assisted living facility, her soul would wither away.
I encourage families to talk with their loved ones and find out what’s important to them. How do they want their pain managed when they can no longer communicate? Honesty is crucial. The family often has trouble admitting reality. Of course, it’s natural to hope that the person will survive. It’s important not to take away hope—sometimes I even encourage it. I often say, “Let’s hope for the best, but just in case we’re wrong let’s plan for the worst, because we’re not G-d, right?”
If you see that your clients don’t consult a rabbi do you recommend they speak to one?
Always. Especially when there are ethical decisions to be made. A rabbi can also assist if the terminally ill person or his loved ones are experiencing a spiritual crisis.
Some of my patients aren’t observant, and things can get sticky if, for instance, a patient expresses a desire to be cremated.
On one occasion a Jewish woman said she wanted to be cremated. The hospice rabbi sat down with her and discussed the halachic implications. She listened politely but at the end chose to disregard his words. My rabbinic advisor once said to me, “In life, we have circles of interest and circles of influence. In a case like this, one has interest but no influence.” It’s an important nuance for me to remember in my work.
What if it’s clear to you that the terminally ill person doesn’t want to discuss an important issue? Should his wishes still be respected?
You have to go to where the patient is. Bring up the topic gently, honestly and directly. If the patient is alert and oriented and making what you feel is a bad decision, there’s nothing you can do. This includes not wanting to make a will, even if it means that after the person dies the family may end up in court and it’s going to be a hassle. You can pray that he will understand the timeliness and importance of the issue, but if he doesn’t, step away.
How do you recommend opening a discussion about the person’s prognosis?
Try to tune in to how the person is doing. Create an opportunity for alone time. You can open with, “I think about you a lot. Could you tell me what it means to be a good friend right now? I want to be helpful.” Or say something simple like, “What do you need from me right now?” The person might say, “Please organize meals for my family” or “I need you to be available at 2 a.m. if I need to talk.” Everyone is different and has different needs. Offer to be a good friend or relative and let the person define what he wants. One critically ill friend told me, “I need to be in my cave.” In essence she was saying, “I can’t function and talk at the same time.” I respected her need to feel safe. At a later date you can always come back and ask, “Are you still in your cave?”
Other conversation leads are: “What does the doctor say about what’s going on? What do you think about that? Are you hopeful? Overwhelmed?” A doctor’s visit can open a dialogue. Many people don’t like to burden their loved ones, so if you don’t ask, they won’t offer. A loved one has to show a willingness to listen. You might also say, “It seems like you’re becoming more fragile. You’re eating less and sleeping more.” These things are measurable. It’s not like saying, “I notice you’re sad,” which someone can always deny. That’s why I like to identify practical issues. But again, if the person insists she doesn’t know what you’re talking about, back off.
It’s unrealistic to think that the terminally ill person isn’t experiencing losses, but sharing it can often minimize the sadness. Being open about his condition substantially alleviates depression. Depression is also caused by a lack of peace because of unfinished business. I encourage family members to resolve past conflicts while their relative is still oriented.
As a hospice social worker, I try to bridge the gap between the family and the terminally ill person. I’ll encourage the family to help the person by asking questions. It’s crucial to feel out where the terminally ill person is in his stages of acceptance. Some patients never openly acknowledge that they are terminal. All they want to talk about is the next treatment, the next doctor’s visit... Some patients know but are afraid to share because they don’t want to hurt their loved ones.
When do you begin a dialogue?
When a patient is referred to hospice, a social worker is required to perform an initial assessment. I begin the conversation then, but in a vague way. I say something like, “Do you have your affairs in order?” Then I let them define for me what their affairs are.
Sometimes when death is imminent and I mention something like funeral arrangements and the family hasn’t accepted the truth they get annoyed. But these things need to be worked out even though it’s very hard.
I try to bring up the subject of wills in the beginning: living wills, inheritance wills, ethical wills. I encourage my clients to write letters and give blessings to each child. An ethical will contains the values we want our children to live by. I encourage patients to write them down and individualize them so that each child feels he’s been given his own words of wisdom. A living will is crucial for decisions that need to be made when the patient is no longer oriented.
If everybody including the terminally ill person is in denial about the prognosis, isn’t it sometimes better to just go along with it?
Denial has its place. Even saying, “We hope for the best and prepare for the worst” is partnering in denial. I would recommend pushing the denial a little bit and then backing off. It’s sort of like a dance, saying the truth and then stepping back. For example, if someone asks me if I’ve ever seen anyone survive in her condition I’ll say the truth: “I haven’t, but I’m not G-d.” I’ve learned that denial can be a healthy defense mechanism. It helps us function. It can help a young wife whose husband is terminal send the kids off to school, eat, sleep and go to work every day.
I once told a young mother who was terminally ill, “G-d willing, you will live a long and healthy life. But in case G-d has different plans, let’s discuss what you can leave to your children as your legacy.” A legacy project, by the way, can be incredibly healing. Our hospice bought this woman some wedding cards for her young children and encouraged her to write them letters to be opened only on their wedding day. I asked her, “What would it feel like if you were the child and missed your mother so much and read that letter?” We also bought another client a teddy bear with a tape recorder inside and recorded her voice reading a story to be given to her pregnant daughter’s child, whom she knew she would never see. The grandchild will always have that.
It’s disheartening when family members lack the courage to speak to their terminally ill loved one. I ask them to search their hearts. I ask them to imagine ten years from now when you think about the opportunity you had to speak to your loved one and now you no longer have the opportunity. Did you say everything you wanted to say? Do you have a clean conscience? Did you ask for forgiveness?
The terminally ill person often wants to voice his concerns but thinks that his relatives don’t want to hear them. In order to protect them, he says nothing. Sometimes both sides know the truth, but each thinks that the other side doesn’t wish to discuss it. There is incredibly important therapeutic work that cannot be done unless the person’s condition is acknowledged.
How do you achieve closure, especially in conflicted relationships?
Sometimes, as the outsider, if the family member is uncomfortable bringing up past conflict, I offer to be the “bad guy” and initiate the conversation. But if they were never close, it won’t be easy. Initiating a conversation to achieve closure is an intimate act, and the family member must be honest enough to know if this is something she is really willing to do.
Dr. Ira Byock is a palliative care physician who wrote a book called Dying Well. In it, he encourages caregivers to make the following personalized statements to their loved one over the course of time: 1. I love you because… 2. Thank you for… 3. Please forgive me for… 4. I forgive you for… 5. I’m going to be okay.
Along with the physical acts caregivers perform for their loved ones at the end of life, I consider engaging in these difficult, often intense conversations to be chesed shel emes, demonstrating their love, devotion and honor. In fact, it’s the epitome of kindness because it will certainly never be reciprocated.
How does your work impact your own life?
I’ve prepared a living will and an estate will. I’ve appointed a guardian for my children in case, G-d forbid, something happens to me. I’m healthy now, but I want my affairs to be in order because none of us knows G-d’s plans.
I feel that I am doing Hashem’s work. Although it’s sad and I frequently cry after spending time with my clients, it’s a wonderful feeling knowing that I’ve made a difference to a family and helped ease their pain in some way. My job is also an important reminder for me to live authentically, saying everything I need to say to my loved ones now and not leaving unresolved issues.
What is your experience with the actual moment of death?
I’ve learned that people have trouble letting go when they have emotional entanglements. They aren’t at peace and cannot die well.
I’ve observed dying people stay alive in order to see someone, like a grandchild flying in from another state. Others have held on until after a family wedding. To some extent, it sometimes looks like a person can choose when and with whom he or she wants to die. Sometimes a person only passes away once everybody leaves. I believe that even though they are unconscious there’s still an awareness, and the sense of hearing is the last to go. I also believe that every soul has a job in this world and won’t leave until the job is done.
Sometimes if the person is conscious he may say things you don’t understand. Most relatives will say, “Oh, he’s out of it,” but I believe the dying person is completely lucid; he just has one foot in the next world and can see things that we can’t.
There’s a time when we need to stop focusing on what the illness is doing and focus on treasuring our last moments together.
Printed with permission from Ami Magazine.