Counseling the Terminally Ill and the Grieving

Introduction

The following is intended as a guide for those clergy that wish to take on pastoral duties for the dying and their loved ones. This is not intended to replace formal training as a grief or hospice counselor. If you are interested in formal training a few links will be provided at the end of this guide. This guide will focus on three main areas:

1. Counseling the terminally ill;
2. Grief counseling; and
3. Where to find more information.

The diagnoses of a terminal disease is rarely met immediately with a sense of peace and acceptance, most often the individual in question will travel though five separate stages of grief. These stages, in order, are: Denial and isolation, anger, bargaining, depression, and finally acceptance. Recognizing the stage of grief the individual is currently experiencing will help you to tailor your counseling approach.

During the denial and isolation stage, for example, repeatedly confronting the individual with the reality of their condition is likely to do no more than anger them and create a wall of resentment. I have found that the denial and isolation stage is a good time to help educate the individual on the specifics of their condition and on the various treatments that may be available. There is a certain optimism that comes with denial, I recommend taking advantage of the energy that comes with that optimism..

At the same time, help them to combat the desire to isolate themselves from friends and family. Often as the individual's condition progresses they will be increasingly tired and often either sedated or in pain, at that point they may regret isolating themselves from those they love during a time of relatively good health and that regret can hamper their ability to achieve acceptance. There is no reason for the individual to spend every waking moment with their loved ones, and they should be allowed quiet times to themselves, but involving family and friends in everyday tasks, as well as enjoyable outings will create comfortable memories for everyone involved.

In my experience I’ve found the anger stage to be the most difficult to deal with. The individual has come to grips with the inevitability of their condition and suddenly feels frightened, “cheated”, defiant and even unloved. The natural reaction for both loved ones and counselors alike is to distance themselves from the individual, but this reaction should be avoided as much as possible. For the loved ones, a time of detachment can create stronger feelings of guilt once the individual has passed on. For the counselor a time of detachment can harm the individuals trust and make them feel as though they cannot depend on you fully, or that they must guard what they say and how they act with you. This can be very harmful to the counselor relationship. In my opinion, the best way to deal with this stage is to simply let the individual know that you’re there should they need you, let them know it’s okay to be angry, and be honest. Very few individuals enjoy being handled with kid gloves, and an individual with a terminal illness might feel as though they’re being ignored or babied if those around them simply take their abuse without comment.

The bargaining stage usually presents itself in one of two ways - both typified by "if / then" thinking. Sometimes the individual will bargain with their past - "If only I had taken better care of myself, then I wouldn't be sick now." Depending on the situation this type of guilt might be relieved with knowledge. An individual dying of lupus, for example, is unlikely to have had any way to prevent the disease. An individual dying of lung cancer after a lifetime of smoking, however, is unlikely to be comforted by the knowledge that he / she is in fact partially responsible for their illness. In such a case I would recommend looking for ways in which the individual can forgive themselves, and seek the forgiveness of their families, for their condition and eventual death. I will go through a couple of ways this forgiveness can be sought later on in the article.

Other individuals will bargain with their future, though it has been my experience that future bargaining is mostly done by theists - "If only you heal me, I'll spend every day spreading the gospel". I suppose there are ways for an agnostic to bargain with their future as well, I've just never seen it. Unfortunately not much can be done for individuals that bargain with their future. Only time will show them that bargaining doesn't work. Just continue to encourage and listen to them.

Regardless of whether the individual bargains with their past or with their future, the bargaining stage usually leads rather quickly to depression. Individuals that hold some responsibility for their illness, no matter how small or imaginary, may enter a depression over the guilt they feel. Individuals that hold no responsibility may begin to pity themselves and their situation, feeling as if their illness is either an unjust punishment or simply undeserved. Religious individuals will often enter the depression stage with a clear and very painful sense of abandonment if they feel their god did not hear their prayers, or agree with their bargaining. Depression in the terminally ill is particularly difficult to deal with because many of the most common treatments, exercise, outings, etc. may not be practical. When possible an effort should be made to see that the individual is cleaned and dressed every morning, that their hair is combed and set, and that makeup is applied if desired. Opening the individual’s room, if on bed rest, to sunlight or keeping a vase of fresh flowers nearby can also help. In my opinion, the best treatment for depression in the dying is human touch. A gentle hand lets them know that you’re there and that you’re not afraid of them or their illness. Let them know that it’s perfectly all right to be sad, but don’t encourage them to wallow away the rest of their time in a depression

Hopefully, the depression stage will lead into acceptance - acceptance of their illness, the various issues they have dealt with in life, and an acceptance of their coming death. This time is often filled with estate preparation, phone calls and letter writing to old friends, and intimate time spent with loved ones saying good bye. For counselors this may be a time when your efforts are best spent in helping out with day to day tasks, taking dictation, and running errands. It is important to note that this stage is not always achieved. Some individuals may never progress beyond denial, though that would be rare, some may never progress beyond anger, and quite a few will not progress beyond depression. For your own sanity, try to avoid "goal-oriented" thinking in your counseling. It is not your duty to see that any one individual achieves a measure of acceptance before their death.

These stages are not always followed one after another, and cannot be used as a checklist toward a happy death. An individual may flit from one stage to the next, and then back again, several times. Some individuals may seem to skip certain stages, or re-visit a single stage while progressing through the others. It is important as a counselor to listen to the individual and be aware of their emotional needs and cues as much as possible.

Rituals for the Dying

Rituals are a very normal way for individuals to deal with life's changes. I have found the following rituals to be helpful when dealing with those individuals that are experiencing the depression and acceptance stages associated with their terminal illness. (Before those stages the individual may not have come to grips with the terminal nature of their illness sufficiently for rituals to have any positive affect.)

Individuals struggling with guilt can often be helped to forgive themselves using simple rituals. An individual feeling guilt over their perceived responsibility for their illness might be helped by making an effort to help others avoid the illness themselves. A heavy smoker dying of lung cancer or another related disease, for example, may find comfort in buying space in a high school or local newspaper in which to tell their story as a way of discouraging others from smoking; or even in donating a small amount of money to an educational program.

Individuals experiencing guilt for thoughts or deeds done during their life may find comfort in writing down those things that are causing them guilt, confession style, and then burning or ripping the paper in which the confession is written. (NEVER burn anything in a room where oxygen is in use!) This method can also be employed when an individual is dealing with the "if only"s. ("If only I had exercised more I wouldn't be sick" or "If only I had stayed in touch with Bob I wouldn't be so lonely.") Have the individual write one "if only" statement on each piece of paper and then destroy them.

Other rituals that might be used include:

• Video taping messages for future family members. (This is especially helpful for those individuals that may die before an expecting loved one gives birth.)
• Video taping, or audio taping, stories for children or grandchildren.
• Writing, recording, or painting important moments from their life.
• Writing or recording messages to family members.
• Addressing birthday, anniversary, Christmas, and other cards to be given to family members after the individual's death.
• Preparing family photo albums.

Be creative and enlist the help of the individual whom you are counseling.

Special Considerations

As with any counseling situation there are special situations. Adults that are not yet elderly may have difficulty coming to terms with their terminal illness; as a result the denial, anger and depression stages may be particularly difficult. Children with terminal illnesses may not have the emotional maturity necessary to deal with the grief felt by their family and friends. Individuals dealing with diseases that carry a social stigma, such as AIDS, may feel particularly alone. While each individual situation is different, situations such as those listed deserve special attention. In my opinion these situations, with the possible exception of "social stigma diseases", are best left to a trained counselor.

What can I do?

Often the most important function of a counselor is simply listening. I have written a separate article that gives tips on listening and understanding the individuals that you counsel. You can also help by taking care of those annoying everyday tasks that can be so overwhelming for those who are sick. Don't be afraid to wash a dish, take out the trash, or vacuum the rug. Many terminally ill individuals have trouble sleeping, try scheduling a few of your appointments an hour or so before the individual would like to sleep and read a new or favorite novel to them.

Avoid the urge to take over the individual's life for them, and avoid acting as a parent, telling the individual what they can and cannot do.

What can I say?

First of all, a good rule of thumb is to listen three times more than you speak. When you do speak try to say things like:

• "It's normal for you to feel that way."
• "I'm listening."
• "I'm here for you."
• "I understand what you're trying to say."

Avoid saying things like:

• "I know how you feel."
• "Everyone goes through this eventually."
• "There is no need to feel that way."
• "Don't say things like that."
• "Don't be pessimistic."

Also, be specific when asking questions:

• "Would you like me to wash the dishes?" rather than "Is there anything I can do?"
• "Would you like another pillow?" rather than "Are you comfortable?"
• "Would you like some water?" rather than "Can I get you anything?"

I recommend counseling either the individual with the terminal illness, or their loved ones, but not both. I feel this would be too taxing on the counselor, and there may be conflicts of interest. I personally do not have experience in counseling the loved ones of a terminally ill individual, only in counseling those loved ones after the individual's death. Because of this, I will focus on grief counseling as it pertains to death rather than terminal illness. Also, I dealt much more directly with very specific aspects of grief counseling, namely counseling parents who had lost or were to soon loose an infant child either born or unborn. If anyone has more experience in other areas of grief counseling and would like to add to this guide please contact me.

The stages of grief in family members dealing with the death of a loved one are the same as those the individual themselves may experience while dealing with their terminal illness. During the denial and isolation stage the individual's loved ones may seem as though they're dealing rather well with the death. They may talk and laugh as though nothing is wrong, explaining to those that ask that they are perfectly fine. It can be difficult to ascertain whether this is a true expression of, or whether they are denying, their feelings. I recommend simply giving them some time; it will become apparent before long if your services are needed.

It has been my experience that the anger stage is somewhat downplayed in those individuals grieving over the death of a loved one. The individual may feel as though they are being selfish for feeling angry, or they may feel a great deal of guilt over feeling anger toward the loved one that died. I believe that this stage can be quickly overcome simply by giving the individual "permission" to feel angry. Letting them know that it's all right, and actually healthy, to feel anger over the death can help the individual a great deal.

The bargaining stage is again typified by "if / then" thinking, though in the grieving this type of thinking is very seldom expressed in a future tense. More likely the individual will bargain with the past - "If only I had taken Dad to the hospital sooner, then he might still be alive." As with the terminally ill this type of bargaining may be helped through education. Helping the individual to sort out what was and wasn't within their power can be quite comforting. It may also be beneficial to confirm that the individual acted in the best interest of their departed loved one. This is especially true in those instances where the individual in question played a direct part in their loved ones death by signing a Do Not Resuscitate order, or a livingI have found that the depression in those grieving over the death of a loved one can be very complex. Not only are they likely to be feeling lonely and missing the presence of their loved one, there also may be feelings of guilt over things they feel they should have said or done; or in the case of someone whose illness was long and painful, the sense of relief they feel over their loved one's passing. Again, explaining that these feelings are perfectly normal can be a great comfort. I have also found that explaining your own personal stories of grief over the death of a loved one can be helpful - as long as you are completely honest with all that you felt during that time and have adjusted in a healthy way to the death yourself.

Acceptance comes eventually to most individuals dealing with the death of a loved one. Life must go on. It is important to note, however, that with acceptance may come several small cycles of guilt and depression. This is also normal, but if an individual finds themselves dealing with depression long after the death it may be advisable for them to discuss it with their physician.

Rituals for the grieving

Most of us are familiar with several rituals for those grieving over the death of a loved one. Funerals, wakes, and graveside services being the most popular examples. Many of the following suggestions can easily be worked into most graveside services, or performed in a private way by individuals or families.

• Writing letters to the deceased can be very cathartic. Once the letter is written the individual can either mail the envelope without recipient or return address, send the letter down a river, stream or into the ocean, or attach the letter to a helium balloon and let go in an open space.
• Planting a tree, bush, or perennial flower in honor of the deceased.
• Making a donation in the name of the deceased.
• Supporting with either time or money a group that works to raise awareness or develop cures for the disease from which the loved one died.
• Organizing a photo album filled with pictures of the deceased.
• Visiting sites that were important to the deceased. For example, their home town, the location where they were married, or where they spent their honeymoon.

Again, be creative and enlist the help of the individuals you are counseling.

Special situations

While the death of a loved one is nearly always difficult there are, of course, special situations that make healing more difficult.

The sudden death of a loved one often brings with it a dream like quality, especially when the body of the deceased is cremated, as is often the case in many sudden death situations. It is often very difficult to accept that the death has actually occurred, and often further grief can be caused when the individual forgets that their loved one has died, only to remember once again. (On a personal note, my uncle was shot and killed in a faulty no-knock raid two years ago. Even as a trained grief counselor I still have difficulty accepting his death.)

The death of a child can be shattering to the parents and even extended family. I personally would recommend that such individuals be referred to a trained counselor. Along those lines, individuals that are dealing with the death of a child through stillbirth, miscarriage, and abortion can have many complex difficulties with the death - especially as such deaths are often "glossed over" in our society. The individuals affected may feel as though they are the only ones that feel a life was lost. Again, I would recommend professional counseling for such individuals. Occasionally only a professional counselor is able to demand that the individuals rights are respected by hospital staff in allowing them to view the child, take pictures, and preserve mementos such as a lock of hair or hand and foot prints.

What can I do?

Much as when dealing with a terminally ill individual the best thing you can do is listen. Offer to help organize any services or ceremonies that will be performed for the death. Run errands, pick up and deliver flowers, wrap up leftover food, take care of those little things that seem to add up.

Avoid taking care of the personal effects of the deceased. This can be a difficult activity for loved ones to perform, but it is an important one as it gives the individual time to adjust to the loss and sort through personal memories.

What can I say

The same guidelines that apply for those with a terminal illness apply here as well. Validate their feelings, avoid "I know" statements, and be specific in your questioning.

Brownson's Nursing Notes

Death Preparation and Grieving Internet Resources