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What Goes Through Dying People's Minds, According to an End-of-life Counselor

What do dying people regret? And what do they want to know?

Meirav Gary, a certified spiritual care provider at the rehabilitation hospital and the cancer hospice at the Sheba Medical Center, is co-chair of the Israel Spiritual Care Association. She is married, has two children, and lives in Tel Aviv.

Meirav Gary, can you tell me what spiritual care is?

Being with a person who is experiencing a major rupture in his or her life, and is dealing with a “departure” from life or from life functions.

Departure from life, in other words, the moment before death?

Yes, for instance, cancer patients who are about to die.

And from previous life functions?

For example, people who have undergone serious car accidents and were left paralyzed.

And what does that mean – providing spiritual care prior to death?

Eyal Toueg

This is a period of abiding darkness, difficulty and loneliness. We are there alongside the patient, in accordance with his needs and his desires, and we accompany him along the path that he chooses to take at the end of life.

With what tools?

Listening is one of our biggest tools. Together with the patient, we are looking for hope.

What hope can you offer when a person knows he will reach the end of life in the very near future?

That it won’t be painful, for instance, that the end won’t be like in the movies. People come in with dramatic images of death drawn from the cinema, so we talk about the hope that there won’t be suffocation, that there will be quiet, love, calm, serenity.

Can you promise such a thing?

I can promise we’ll try.

It seems obvious that the system treating the patient will see to it that it will not be painful. Why are you needed?

The sick person lying in bed needs someone to hold his hand and tell him: We will look after you, we will ensure that you won’t be in pain.

Aside from helping with pain, what else?

Praying with the patient, hoping together with him. Each individual has a need to scream his own scream. Prayer is a human right and also a human need.

In the religious sense?

Not necessarily in the religious sense.

The word “spiritual” has a religious or mystical connotation.

In truth, sometimes people are deterred by the description “spiritual care” because they associate it with religion or Indian spiritualism. But the world of the spirit does not belong solely to religious faith. Religion is only one aspect of human life.

Meaning that spiritual care can be suitable for everyone?

Absolutely. We care for everyone without regard for race, ethnic origin or nationality, including foreign laborers. I cared for a Filipina and made sure that her priest and members of her community would come, and that she would be given dignity in accordance with her culture. That is part of our professional training. My own particular spiritual roots also include Judaism, because it is part of my world, but they will not be based solely on [religion]. We have no particular religious agenda. The secular person can cope through literature or poetry.

Some say ‘no’

How do patients accept you and your colleagues?

During my first year of work, there was a woman in the nursing-care ward whom I was asked to approach, because she was “constantly complaining and she was problematic, and alone.” I went to talk with her and she told me to leave. She said: “What do you want from me?”

How do you respond to someone like that, who is in a dark, bitter place, and simply does not want to see anyone?

I explain that I’ve come to be with her and to help her determine where she might be able to draw strength from to deal with the difficult situation she is facing. And then to assess together what might be the source of her strength. There are people who say “no” and that’s okay.

And what happened with this woman?

I went in and introduced myself. I asked her permission to sit next to her. At first, she did not want to talk with me. She said, “Leave, because I can only make you sad.”

Your line of work can bring a person down.

She told me about her son, who died in the Yom Kippur War, and how ever since that happened, she had lost her reason to live.

Did she have other children, a family?

She had another son, but he and his family did not come to visit.

Is that common?

I see it fairly often.

In this sort of situation, would you try to contact them?

I would do that if the patient wants me to. But she said something to me that I will never forget: “Don’t invest any effort in your children, do you hear me? They will only break your heart and cause you pain. Invest in yourself. I was foolish, and I would run after my children. Don’t do it. You don’t want to give them everything you have, you aren’t worth anything to them.”

What can you possibly say after something like that?

I lingered by her side, sat down, tried to get to know her. I had attempted to shine a light on what existed – for instance, the love for a son who had been killed and the fact that she was nevertheless alive. At that point, she did not want to die, she wanted to live. I stressed the connection with me that she was feeling. Little by little, she opened up and told me, for instance, about the labor camp where she and her sister were interned during World War II, and how the two of them were saved in a series of miraculous events. She told me about the strong connection that had existed between them since then.

Would her sister come to visit?

No. Her sister was in a different nursing-care facility, so they could no longer see each other; they could only talk on the telephone. I would come in and see her once a week, bring her books on history and politics – that’s what she wanted – and we’d talk about them. She also told me what a good worker she’d been. It gave her the discipline to contend with difficulties she had experienced, including physical ones. Each time I saw her, she’d tell me that I’d be better off forgetting her and her babbling, and she would apologize to me for telling me sad things. I would reply that I’d come again, and she’d ask – again and again – what for?

And what would you say to that?

That we’d look for a reason, together.

Did you speak about death?

We spoke about her difficult health situation, about her fear of suffocating, about the difficulty of getting a certain medication that would help her, and at one point also about the desire to die and put an end to her misery. I legitimized her desire to end life with as much human dignity as possible. I joined in with her prayer that her suffering would end, and that her dignity would be upheld. To my regret, when her situation worsened, she was transferred to the hospital, and in the end they performed resuscitation on her even though she had requested that they not do so.

So they did not make even this little thing available to her, and they extended her suffering.

David Paul Morris, Bloomberg

Yes, that was five years ago, when regulations we have today regarding end-of-life situations were not yet in effect. She remained in the hospital for a certain period of time, and then passed away. I hope that she at least went with some sort of experience of a connection, and was maybe a little less lonely.

You said “passed away,” not “died.”

It may be that in the word “passed,” something of the individual remains – the suffering passed, the difficult world he was in passed. The word “died” has something awfully terminal about it. In any event, as a spiritual care provider, I do try to put the word “death” out there on the table.

Doctors usually have a hard time talking about death with their patients.

Correct, but that’s slowly changing. For instance, the medical school at Hadassah University Hospital is teaching a course called “The Individual and Medicine,” in which they relate to the issue of delivering the bad news.

Meaning how to tell people about their impending death?

Yes, what it is like giving bad news to a patient and how to do it. The nonprofit where I did my training, B’ruach [By Spirit], gives a full day of workshops on this to medical students. In general, in terms of my own sensibility, the issue of how to relate to the spirit of the individual is in some way more integrated into life among the younger generation. There is greater openness and understanding of such concepts as “death is part of life,” or of the theories of the psychiatrist Elizabeth Kübler-Ross, who spoke about the process people undergo once they have learned they are terminally ill.

Nevertheless, the fact that doctors have a hard time coming to terms with death at times leads to unnecessary medical intervention and in effect to over-treatment at the end of life. It is well known that the final year of life is the most expensive one, and its cost to the system is similar to the cost of all the medical care provided during the entire life leading up to it.

There is something Jewish about that – fighting until the bitter end.

That is one of the reasons why it is so hard for religious Jews to turn to hospice programs.

Doctors consider it a failure on their part when someone dies.

True, they are taught to heal and not to let go. But some doctors understand that the suffering will only increase if another treatment is given. I am already hearing such voices – but can I say that we are already where we need to be? No. What’s needed is a change of the mindset.

What is your role at the delivering-the-bad-news stage?

We are present, and the doctor whose job it is to tell them receives our assistance. Our presence makes it possible to believe there is hope even when they hear the bad news.

Picking up the pieces?

Yes.

This is essentially a type of treatment, so what is the difference between it and the work of a psychologist or social worker?

Our most important tool, listening, is the same tool used by everyone – the nurse, the psychologist, the social worker and the physician – all of them engage in spiritual care, so there is a commonality to all these roles. But the spiritual care provider does not try to change things; it is not therapy.

In essence, a friend or a relative can also be a spiritual caregiver, by listening and supporting.

True. When I walk into a patient’s room, the first thing I do is try to see if maybe there is a member of the family who is providing spiritual care, maybe it is already taking place. However, the place of the disease creates a sense of loneliness. One line that I hear a lot is, “No one really understands my pain and suffering.”

And you do understand?

I cannot exactly understand, either, because I am not in his situation. But I can be with him and can be empathetic and can cry with him.

Crying and laughing

Are patients and their families able to talk about death?

Very few patients are able to take a courageous stance vis-a-vis their situation, and really manage their impending death.

Even when they’re already in a hospice – a place you come to in order to die?

Even there. Some families will tell the patient that a miracle could still take place.

Ignoring reality or denial of reality are also ways of coping, and are suited to some people.

Absolutely. I don’t argue with families that tell a patient arriving at a hospice that he has “come for rehabilitation.” Everyone creates hope in the way that’s most appropriate for him. But the knowledge that we are hoping for a miracle can coexist simultaneously with the attempt to prepare for the worst of all. We are complex creatures. We cry and we laugh with the same eyes, just like in the Yehuda Amichai poem.

Do people succeed in reaching a sort of closure with life?

They’re getting closer. Once it becomes part of the public discourse, it also has an effect on patients and on the doctors. You can see how it is developing in that direction.

Can you give me an example of this development?

In 2011, when I started to work as a spiritual care provider in an old-age home, they would simply remove the body surreptitiously, so that the other residents wouldn’t see.

Not to spoil the mood?

Yes.

That’s absurd. Did they really think that no one would notice that their friend had vanished?

Exactly. You’re sitting in an old-age home – and suddenly a friend vanishes. For the resident, all of a sudden, there’s an empty seat at the table, a place where someone had been sitting. And the resident is left to say to himself: Wait a second, tomorrow I could disappear, and they’ll never talk about me ever again. When I found out about this, I suggested to them that they arrange a bit of a farewell, a symbolic ceremony.

And did they go for it?

The staff decided not to. They preferred not to have to deal with it. But the conversation did change. Today, there are spiritual care providers in an increasing number of old-age homes, and they are holding small ceremonies, gathering people together and saying a sentence or two about the resident who passed away. These are wheels that are moving slowly.

How can you know if spiritual care is indeed helpful for people?

If you want to assess it in economic terms, I would say that there has been an increase in demand. And medical staffs ask for it, too.

The staffs are under such a heavy burden that any additional person could only help them.

True, but staff members themselves are making use of spiritual care. It helps them to deal with issues like burnout, erosion of their ability to show compassion. We conduct workshops for them, and also one-on-one sessions. Some institutions have brought in spiritual care providers just for the staff.

What do you teach them?

I try to connect them with a sense of meaning, with the sense of their own human dignity, [and show them] that in spite of the low salary and the tough work hours, they are nevertheless doing something here that gives meaning to their lives. And there will always be a story that someone will tell about a connection that was made with a patient that he or she will never forget.

Do you have a story like that?

I’ve got tons of stories like that. For instance, a story from the day before yesterday: a young woman, 45 years old, who is in a hospice, and who told me, “I don’t have the strength to talk today.” And then she said: “You know what? Everyone’s always asking me about me, how about if this time you tell me about yourself?” I told her that I had been in the theater for many years, and that I got bored, and that something was always missing for me. I started to talk about work that is meaningful, and she took it from there, and told me about how she had saved a child’s life, a boy who is now 20-plus years old. And that he’d called to ask how she was doing. That is a source of strength. When a woman can look back on her life and say, “I did something, I saved people’s lives.” We seek meaning, and even one single thing can be sufficient.

Sometimes even that is hard to find.

I am working with a woman whose only daughter, who is 14, is very ill. She tells me: I have no reason to live.

What do you say to that?

I tell here – you’re right. Right now, there is no reason. And I cry with her.

I really feel like crying.

Yes, at times you feel like crying. Not every time, but crying is good, it is a gift. People are afraid to cry, they will tell a person ‘don’t cry,’ ‘be strong.’ Families don’t dare to cry when they’re with a patient.

It isn’t so nice to break out in tears next to the patient.

The visitor assumes that this will convey the message to the patient that his condition really is bad. But, he often knows that he is in terrible condition. You must take a close look and see what is right and what is not right for this particular individual. For some people, repression and denial is good, but there are others who want to cry together with you and the fact that you are crying enables them to cry. Haim Nahman Bialik said that for the person who speaks, there are three gifts for times when words do not suffice: “Playing music, crying and laughter.” Crying is part of our language.

Are your tears genuine?

Yes, absolutely. And we do breathing exercises together. I advise [the patient] to remember this throughout the week, and to breathe deeply for a few minutes before she gets out of bed. We also use guided imagery. We study a text together.

In short, you must be sensitive.

Providing care for someone means leaving your ego outside the door and coming from a place of listening that is open and enables the other person to be present.

It must be unbearably hard to care for so many people and then to have to part from them. Over time, isn’t your compassion worn down?

That’s part of the studies and the training – knowing how to separate from the patient, too. To separate from the individual across from me, and set apart his emotions from my own. Not to mix up the two. I very much identify with the patient’s suffering and I cry with the patient, but I know how to leave it behind.

How? How do you come home after walking out of a hospice with all the tragedies it contains?

You go swimming, listen to music, those sorts of things. I can’t talk about it at home.

Really? Why?

I do not think I should weigh people down with these kinds of stories. If someone expresses an interest or if it’s relevant to something, then yes. After all, most of us do have contact with people who are very ill, we have aging parents. But I also draw from the caregiving world in my family life.

What, for example?

The use of caregiving tools, as compared to treatment, worked very well with my children.

Meaning what?

Meaning that I now know they are a separate entity and I am merely a witness. I am not running their lives. I listen. The tools of spiritual care can be useful in all sorts of situations.

Primacy of dignity

What is on the minds of people whose lives are about to end? What troubles them? What do they dwell on?

There’s some great research that’s been done on this. The first thing is dignity. Seeking dignity in a situation in which a man who only the day before could go to the bathroom [independently], but now requires a nursing staff to change his diaper. Seeking a way to preserve one’s sense of humanity in a hospital in which the individual loses his privacy, loses control over his life. The second thing is the patient’s fear that he is a burden on the family, and the third thing is hope. These three issues are the primary subjects we encounter in spiritual care.

Tell me some more about the being-a-burden-on-the-family issue.

This is the subject I hear about the most. People are pained by the fact that they are a bother to their children. They tell me: “She has young children, why should she have to come and care for me?” My job is to try and show them that it is also a matter of dignity for the children, and that the family tradition includes caring for the weak, that the moral value of our society lies in caring for the weak.

Is it possible that some members of the family are simply sending that message to the patient – that he is a burden on them?

Possibly. And then I will sometimes have a conversation with them. It can also be discussed at a theoretical level.

Give an example.

Two sons told me they were angry with their mother because they did not feel that she was showing even an ounce of compassion for their dying father, while at the same time, the father described his marriage as being wonderful. So the four of us sat down – the two sons, the mother and I – and we spoke on a theoretical level about the commandment to respect one’s father and mother, about the heritage of caring for the elderly, and how things were in the past. We talked about the cycle of giving and receiving, about how every person will someday arrive at a situation in which he has to be on the receiving end, and about how when we give we are also receiving, and vice versa. We didn’t get into their private story, but I saw how without saying a word, the mother understood what we were talking about. At the end of the conversation, when the mother left, one of the sons smiled and told me: Now I understand precisely what spiritual care is, and where you come into the story.

What do people want to know before they die?

It is important for people to know that something will remain after them, and it’s not a matter of money. People want to hear that the children they raised, and more generally all of their dear ones, will go on with their lives.

Do some patients want the family to have it a little tough without them?

Disease does not alter the nature and character of the person. The way he lived is the way he will be as he approaches the end of his life. People can die embroiled in conflict; each and every family is unique. Some people come in without family. Alone, with friends, or with a pet. Once I walked into the room of a 40-year-old woman with a vascular disease. I saw two green eyes, beautiful eyes with a face full of joy. Only when I took a second look did I see that she was in a wheelchair, and that she was missing both her legs. She asked me in to sit down with her on the porch off of the room. She was smoking and she told me her life story: One son doesn’t talk to her, the second one visits maybe once a month. The people around her are angry with her and blame her for her situation, because she was unsuccessful at quitting smoking and living a healthy and normal life.

Everyone’s critical of her.

Yes, and I would come and sit and listen and I would never criticize – there were enough other folks who were telling her that she was endangering her life. Essentially, I was reinforcing her hope in life and her right to be treated as a human being with dignity, even though in society’s eyes she seemed to be a weak person who was breaking the “rules.” Over time, she also told me of her dream, of her son coming to visit, and we spoke about the legitimacy of her asking for respect and dignity from her son, from the medical staff, from her spouse. I was her “tailwind,” and she felt capable of standing up for herself in this sort of environment, and demanding the respect and dignity that any human being in a weakened state deserves. To say: It’s true, I am not perfect, but I am still a human being. Within this process she dared to ask – and her son did come for a visit. She dared to open a door and to not remain angry. She passed away with a sense that she’d been seen as a human being.

What do people have regrets about?

People regret not having loved enough, not having traveled enough. There are some people who waited their whole lives for retirement to enjoy life and travel – and then it all suddenly ended. That is a big source of pain.

A sense of missed opportunity.

Yes, that whole issue, of missed opportunities, is powerful. Missing out on realization of dreams, because we only get one life.

Maybe we should suggest that healthy people dream a little bit less, and limit their expectations of life?

No, I would say the opposite – dream large. It’s a shame that not everyone allows themselves to dream. I say: Use your creativity, for instance. You don’t have to reach a level where they are hanging your paintings in a museum. If you enjoy scribbling, then do it, and if you love to dance – take a folk-dancing class.

Basically, all of us are here for a limited period of time, and it is only by error that we live as if we have forever.

True, and we get a reminder of that every so often.

In short, life is risk management, between “eat and drink, for tomorrow we die,” and “save and scrimp every shekel for when you retire.”

You can combine the two [and decide]: I won’t travel once a month, only once a year. Do something that will leave you something. Spiritual care attempts to shine a light on those places where the person has not missed the opportunity. The places where there are points of light.

Have you had any cases that broke you?

Mainly when there are instances that come very close to my own personal situation. For instance, when someone who is the age of my child is dying, I have a very hard time with it.

When is it hardest for the patient?

At night. When everything is quiet all around, the sense of loneliness raises its head, you are more conscious of the pain, of your lack of control. In the daytime, there are distractions. Also, at night there isn’t any support, because there is a reduced staff.

How can that be remedied?

Religious people have faith that the angels are looking after them. So you can take the angels as a symbol. Someone is watching over you. The knowledge that someone is watching over you, who loves you even if he is somewhere else.

Reciting Psalms

Do patients and their relatives find comfort in religion? Do religious people find comfort more easily?

At times, when there is faith, a person has a source of strength that helps him handle a difficult period of time. If a mother believes that her child was born to her “in trust,” and that God took the trust back – it makes it easier for her to bear the immense suffering of a parent who loses a child. Faith in God can be a source of strength, but on the other hand, it can be a great disappointment, along the lines of “how could this happen to me – that a righteous person is suffering.” I always try to differentiate between punishment and illness. Children get sick, and so do the righteous.

That really is something that is hard to accept – why me, of all people, or why my child?

My answer is that there are things that are hidden from us, things for which we don’t have an answer. And if reciting Psalms is helpful to a religious person, we will read Psalms together. People find a lot of comfort in these verses. Whatever provides meaning at a time like this is right.

Do you pay condolence calls or go to the funerals of patients you have counseled?

In principle, I accompany my patients only until the end of life, although doing more is not forbidden. There is also spiritual care after death. The Ministry of Social Affairs and Social Services has a project together with the Elah Center for Coping with Loss, in which spiritual care is provided to family members of people who died in traumatic circumstances, such as accidents, suicides or murders.

Tell me a little about this.

There are 56 certified spiritual care providers in Israel, and in the near future they will be joined by another 25, who recently passed the certification exams. We are trying to upgrade the professionalism of spiritual care. There is still no licensing in this field, just as there is no licensing for any of the complementary medicine disciplines. We are trying to adopt the criteria of the U.S. Department of Health, which has published regulations on this matter.

Is it publicly funded in Israel?

No. Our main funding agency for the past nine years has been the Jewish Federation of New York. It has developed and funded the field of spiritual care here. With its assistance, we are trying to implement regulations appropriate for Israel. In the U.S., every hospital has spiritual care providers and there are rotations, meaning that it is possible to call in a spiritual care provider in the middle of the night. Every hospital also has spiritual-care students. The dream is to see a patient’s spiritual care needs being included on his admission questionnaire – what are the patient’s spiritual needs, for instance. He would be able to write, ‘I am a believing person, I feel alone, etc.’

But why aren’t there any public funds allocated to this?

The previous chairs of the NGO tried to add it to the health basket [of subsidized medication and treatment] but were rebuffed – it isn’t clear why. We’re working on it, we will not give up. We’re also trying to get it added to medical health policies, via the [private] insurance companies. The Ministry of Health added palliative treatment [which focuses on easing the severity of the symptoms of the disease], which also includes the spiritual dimension of treatment, to binding regulations, beginning in 2013. Courses are now offered, on providing support, to nurses and for physicians in old-age homes. Increasingly more people understand the significance of spirituality, and at Sheba, Rambam [Medical Center in Haifa] and other places, there is a trend toward partial co-pay funding.

Are all of the caregivers women?

The majority are women, but there are also a few men. And usually this is a second career.

How do you explain that?

Because it’s a difficult field for young people, and oftentimes people come into it as a result of personal experience they’ve had. Perhaps also for financial reasons. It is not a profession that has any financial future.

Eyal Toueg

Why would someone choose a career in spiritual care?

I like what I am doing very much. It gives me meaning. It allows me to appreciate what I have and to say thank you for the little things and the big things. I come from an ambitious world that is constantly pushing for higher achievement, a world in which making do with what you have is at times even seen as threatening. And I think we have to try to strike a balance between the two – finding the dream that pushes you forward, and at the same time being connected to the good that exists. And this good has a wide variety of ways in which it can be expressed.

You said that you left a career in theater?

Yes, I was a Tel Aviv-based actress. I worked in all of the well-known theaters – Be’er Sheva, Beit Lessin, the Cameri. I also appeared a bit on television, on the program “A Matter of Time.”

How does one disconnect from the world of show business? From the applause?

My friends are from the theater world; my husband, Avi Cohen, is a television person. He’s currently the editor of “Gav Ha’uma” [“Back of the Nation”], and he used to edit “The Hartzufim” [both of which are political satires]. My son, Michael Cohen, is a hip-hop musician who constitutes half of the duo Cohen@Mushon. And my mother, Pnina Gary, is also in the theater. So I am not disconnected from it, but for me, it became less fascinating. The price you pay for being preoccupied with ego and with chasing after love from the audience, the management and the other actors – personally, it became difficult. Applause? It’s surprising how little I miss it. I had good things going on in theater, some of which I took with me to counseling. For instance, the power of creativity ... But it’s hard to get into a van every evening and drive somewhere, at the same time as everyone is heading home.

When is the last time you acted?

In 2009, in a play called “Driving Rain,” with Amos Lavi. He died before the final few performances, and we tried to re-stage it with another actor, who also passed away, so we closed the show.

As you said, death is part of life. What did your mother do?

My mother, who is now 89, was an actress and theater director. When she was 80 she wrote the play “An Israeli Love Story,” which she also directed. There was a book that also came out, and a film, by Dan Wolman, is set to come out soon.

A true story?

Yes, it is about her own love story. She was supposed to marry Eli Ben-Zvi, the son of Israel’s second president, Yitzhak Ben-Zvi, but he was killed a week before the wedding. As a child, I remember how we used to visit the President’s Residence and meet with Rachel Yanait Ben-Zvi. After my father passed away, she published the story.

Who was your father?

My father, Robert Gary, was a journalist with the Reuters news agency. He died very suddenly and I had no opportunity to say goodbye to him. Maybe that’s one of the reasons for my own search. I am frequently asked: What is harder – a death for which one prepares oneself, say, when the person is ill, or one that happens very suddenly?

And what would you say is the harder one?

I’m not certain which is preferable. There’s no one answer; it depends on the person. Beforehand, we spoke about the patient’s sense of a missed opportunity, and this is one of the difficulties faced by someone who remains alive. Because the connection is cut off when so many things haven’t yet been said. For me, not having the opportunity to say goodbye is harder.

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