To support someone who is dying

How do I support someone with a terminal illness?

In our society of instant solutions, with the emphasis on success and the immediate gratification of our needs, we struggle with the knowledge that our life is temporary and fragile, that we will definitely die one day. Death is something which we try to put out of our minds. It is something for the day “when we or our loved ones – in the distant future – are old”. The fact is, however, that we will all die.
With the development of medical science, more and more people are dying of illnesses which offer a longer period of preparation for death. How do we support or guide people in this time of terminal illness?

Saying farewell

It remains difficult to bid farewell to a loved one. Death is final. It leaves an empty space in the home and in the heart. The person who has died has, after all, enriched our lives sensibly.
For most of us, this farewell is a traumatic experience. We experience it as a loss. With this loss, there is often also a fear of the future.

Usually we also do not have the choice of parting. The farewell with the death of a loved one is forced upon you. It requires an experiential process of mourning and the processing of the loss before  you can find peace again.
As Christians, however, we know that we have the promise of a happy reunion. However, we cannot deny that death causes much bereavement in our lives.

What is “bereavement guidance”?

Bereavement guidance is a difficult concept. Any supporter or companion can only accompany and support the dying person a few steps to experience more quality of life during this time.
Perhaps we should rather speak of life guidance. It is important to guide a terminally ill patient to live optimally so that he or she can die calmly and in peace. No one can, after all, accompany another into death. It is a road which we must all walk alone.
Life guidance means that we help the terminally ill patient to deal with unfinished matters in this final phase of life.

How do I support a terminally ill person and his or her family?

  • A terminal sick state or the death of a loved one plunges the whole family into crisis. It disrupts the circumstances of the family and normal functioning. There is always a whole circle of loved ones surrounding a terminally ill person. It is important that they should all be supported.
  • One person cannot offer this support alone. Therefore there is mostly a multidisciplinary team involved. This team usually consists of the medical doctors and nursing experts who are responsible for the medical treatment and the bodily comfort of the patient. In such a team, other professional and non-professional people can also be involved, such as a dietitian, physiotherapist, occupational therapist, social worker or minister, family members, friends and neighbours. The most important person is, of course, the patient.
  • It often happens that everyone around the sickbed speaks about the patient as if the person is already dead. We so often forget that the patient is still alive, and that only the patient him- or herself knows how they feel. Not one of us standing around the bed knows exactly how much pain the patient is experiencing or with what emotions he or she is wrestling. We do not know the anguish of their souls or the unfinished matters with which they are wrestling. Therefore it is important to always keep the focus on the patient and his or her needs with every decision we make, especially in respect of visitors which can be exhausting sometimes.
  • To support other people through such times, it is necessary that you are conscious of your own feelings about death. You will not be able to help or support anyone if you are emotionally unsure about what is happening. You have to experience peace about your life, about suffering and death. It is important to remember that all of us who are involved with a terminally ill person and his or her family also go through the mourning process every time while we support them.
  • There are certain things which could be very negative for the patient and the family. Destructive help can include:
  • Being “all knowing” and pretending that you know something about everything – also the sick state of the patient.
  • Using clichés because you don’t know what to say, such as telling the patient that the two of you will run the Comrades next year, whilst both of you know that the patient will never get out of bed again.
  • Babbling about your own problems, pains or ailments.
  • To deny the seriousness of the situation as if the patient does not know the truth.

Constructive help includes:

  • Just be there for the patient, even if it means that the two of you talk about the weather or just remain silent. Sometimes it is our closeness which brings the most comfort.
    It is important to listen more than you talk.
  • It is not your duty to provide solutions.
  • Just try to understand what it is about; mostly it is actually about things that are not being talked about.
  • Always talk about hope without being unrealistic.
  • Always know that you are also only human and that you may show your emotions. You are, after all, involved and connected with the patient and his or her family.
  • If possible, it is best for the terminally ill patient to be at home. Do not insist that he or she must be in a hospital or hospice. The patient’s needs are the most important. If the family members are struggling with the care, try to organise that someone else temporarily take care of the patient while they take a break.
  • Try to honestly explain to the patient what is happening. If the patient understands the process of decay, he or she will feel more in control of circumstances and become calmer.
    Remember, the patient’s needs must be handled on all levels. This can include the following:
  • Physical: It is mostly not necessary that the patient experience unnecessary pain. Try to keep him or her as comfortable as possible. If possible, encourage the patient to remain involved in his or her care.
  • Emotional: Because the body is tangible and we can see it decay, we mostly focus so intensely on the physical needs that we forget about other facets of the patient. Emotional care and support is just as important. It will take time before the patient can talk about his or her feelings. Create space for it and always listen patiently.
  • Social: This includes the family, friends and the community. Do not be afraid to talk to one another about the illness and your feelings about it. Listen to one another. Hold one another. It is very important that you as caretaker must not neglect yourself. You cannot help anyone else if you do not have the necessary strength.
  • Spiritual: Besides his or her faith, the patient will experience great loss. It could be that the patient fears the unknown. Reassure him or her of God’s unconditional love and presence.
  • Questions of faith must be answered with great responsibility. Sometimes we provide answers that are too easy or warped which can do damage.

Communication with the dying person

  • What does one talk about with a person who is dying? Remember, he or she is still alive, still has a history, a present and dreams, talents and unique interests. Talk about it. However, first forge trust, otherwise the patient will not easily open his or her heart.
  • Talk to the patient about his or her needs, what he or she would like to talk about. It is, after all, not about your needs.
  • Problems may arise with communication. Family members are often afraid that the truth will upset the patient. However, the patient mostly knows very well what is happening. If you keep certain information from him or her, you can build a wall of tension between you. The patient then feels isolated and often has no one else to share his or her feelings with. These pent-up feelings can do more harm than good.
  • The dying person’s greatest fear is mostly not death itself, but that he or she will become increasingly more isolated or lonely. It often happens that many people visit shortly after the diagnosis, but as time passes, they tend to stay away. Allow the patient to talk about these fears and be there for him or her.

Before the death of a beloved

The ideal is that dealing with bereavement with terminally ill persons should start before death intercedes. Preparation for handling emotions is already being done at this stage. It is necessary that you will be available as accompaniment when the family members need you. The security of a trusting relationship enables them to express their emotions in the safety thereof.

The moment of death

This moment should be undeterred and private, but the patient must also not be left alone. It is important that you as support or accompaniment will show your emotions, albeit “restrained” emotions. Remember, this is not about you. It is important that you do not come across as hard, cold or callous. This type of support requires devotion, surrender, self-denial and the readiness to be involved with people in grief and to support them to the end.

Antoinette Struwig / Marlinda Swart / astruwig@lantic.net

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