Planning the future for your loved ones

Emotional Support During the End of Life

There are many feelings and emotions that are a normal part of dying, both for you and your loved ones. The goal of emotional support is not to try to ‘fix’ these feelings, as they are not broken, but to support each other while you learn to deal with these feelings. It will help you cope better if all of you communicate with each other as honestly and respectfully as possible. The most important aspects of communication are to express love and listen carefully to each other without judgement, argument, or defensiveness.

There are other aspects of coping with impending death, many involving practical solutions. One of these practical solutions is to communicate with your palliative care/hospice team so you can take advantage of the services they offer.

  • They can help ease the fears and anxieties associated with concrete end-of-life plans, such as funeral arrangements and estate planning or arranging help to assist in caretaking at home..
  • They will offer other services, such as counseling or clergy, that can help you and your family express your feelings, communicate better, and improve how you experience the end-of-life process.

Planning and processing an imminent death is among the hardest things you and your family will go through. Aside from the reluctance to bring up the uncomfortable subject matter, there may be a lot of baggage you must lay aside, such as:

  • your own trust issues, fears, anger, inner conflict, unfinished business, or unshared secrets;
  • troubling family issues, such as estrangement, conflict, resentment, and barriers to communication; and/or
  • reluctance to atone for or apologize and ask for forgiveness for past deeds.

It is impossible to go through all the complexities of the interactions among your family and all of the overlapping and evolving emotions that will occur during the process here. However, we will go into some of them and focus on the services available to help you and your family cope with your terminal condition.

While it all works together, there are four general areas of support that you and your loved ones may need assistance with, any of which you may request your hospice team to help you with.

  • Support for each other – ways to help each other process your feelings and learn how to say goodbye.
  • Individual support for you – ways to help you experience the dying process and its effect on your loved ones.
  • Support for your loved ones – ways to help them with their feelings and emotions, as well as learning ways to help support you. 
  • Grief counseling – support for your loved ones after you have passed.

All of this support is available in any combination of individual therapy, group therapy sessions, or support groups.

Mixed-up Emotions

You will surely have a wide range of feelings and emotions that are all mixed together and changing in intensity over time. Your loved ones will be experiencing a similar mingling of emotions and feelings, in some cases for different reasons. To complicate things even further, what you are all feeling will probably be out of sync with your loved ones. This means that what each of you needs will vary over time, so the support at any given time must adapt to these changes.

Grief

Grief is a common emotion experienced by anyone affected by death. It is an adaptive and healthy reaction to loss. Grief after someone has died is usually expressed through mourning (expressing grief and loss to others) and bereavement (experiencing sadness about their absence). This type of grief is further discussed in “Dealing with Grief.”

Grief is normal when anticipating death. Your family and friends will also be grieving about what you are going through and the impending loss of someone who is their loved one as well. It is a very personal process and there is no right way to do it. Grief can be a long and difficult process full of ups and downs, relapses, confusion, and changing hopes for the future. Your grief can manifest physically, emotionally, and psychologically.

  • Other emotions that can be mixed up with grief include sadness, fear, anger, guilt, and regret.
  • You may resent your situation and envy those who are healthy and still have what you no longer do.
  • It can result in obsessions about death, prolonged anxiety, trouble thinking and concentrating, restlessness, withdrawal, helplessness, depression, and even thoughts of suicide.
  • Physical manifestations of grief are common and may include crying, abdominal pain, loss of appetite, intestinal upsets, weight loss, sleep disturbances, headaches, and extreme fatigue.

The well known Kübler-Ross model known as “the Five Stages of Grief” is a good guide of how feelings and emotions can be jumbled together and change over time. Most grieving people will go through all of these stages, but in different orders, intensities, and lengths of time. Some or all of the following may be seen in a person who is grieving.

Traditional Five Stages of Grief

Denial

Denial is often the first reaction to the news about your terminal illness. Why would you want to accept such bad news?

  • Denial can last anywhere from a few hours to many weeks, or occasionally until the end.
  • This stage of grief is frequently associated with fear, shock, or numbness. 
  • This news can make you feel emotionally “shut off” from the world, alone and distant from others who would want to be there for you while you navigate your situation.
    • Isolation can result when you completely avoid them.
    • While it is fine to give yourself space, it is best to not isolate yourself.
  • You may avoid talking about the news with others.
    • Even if you spend time with others, shutting them out could result in emotional isolation.
    • While it is natural to  be apprehensive to talk about it at first, you should let those closest to you know as soon as you’re able. 
    • Be willing to communicate openly. The more you share, the more connected you become.
  • Denial can actually be a mixed blessing, depending on how you react to it.
    • Denial can certainly result in harm if it causes you to isolate yourself, refuse proper treatment and palliative care, seek unproven treatments that will not alter your prognosis, and/or avoid making proper plans for when you become impaired and after your death.
    • Denial could be a benefit if it results in you temporarily avoiding many of the negative emotions associated with dying and continue to live your life to the fullest.
  • Denial can last anywhere from a few hours to many weeks, or occasionally until the end.
  • This stage of grief is frequently associated with fear, shock, or numbness. 
  • This news can make you feel emotionally “shut off” from the world, alone and distant from others who would want to be there for you while you navigate your situation.
    • Isolation can result when you completely avoid them.
    • While it is fine to give yourself space, it is best to not isolate yourself.

Anger

This seems quite normal given the bad news.

  • Although not adaptive, anger is an understandable reaction upon hearing about a loved one’s terminal illness or death.
  • This stage is likely to occur when your feelings about dying are most intense and painful.

Bargaining

During this stage you are looking for ways to alter the situation.

  • It happens while you are struggling to find meaning in the news.
  • This stage is usually the shortest.
  • You may pray for it to go away or make lifestyle changes to change the prognosis. 
  • Through contemplation and talking to others you may begin to think more clearly about the situation and finally begin acceptance.

Depression

It is natural to be depressed about bad news.

  • It is often the result of feeling overwhelmed and helpless.
  • As with anyone with depression, you may withdraw, become irritable and hostile, or express extreme sadness. 
  • Depression may come and go throughout the process, with grief coming in waves of distress.

Acceptance

Even though you may still be experiencing anger and depression, you will almost certainly come to terms with and accept what is happening to you.

  • This typically occurs slowly over months.
  • This acceptance includes adjusting to daily life with the illness, seeking ways to deal with the situation, and making plans for after you die.

Updated Seven Stages of Grief

Dr. Kübler-Ross later refined her model to include seven stages of loss. For this updated guide, there are two additional stages that describe the ebb and flow or milestones in how these emotions change over time and the addition of a new emotional stage of pain and guilt. Three stages now combine a milestone with the predominant emotion during that stage, shock and denial, anger and bargaining, and acceptance and hope.

Shock and denial – This stage recognizes that denial is usually a result of a state of disbelief and numbed feelings.

Pain and guilt – In this stage you are now reacting to the situation and may feel that the loss is unbearable, and guilty that you’re making loved ones’ lives harder because of your situation.

Anger and bargaining – This stage recognizes that anger is the most likely emotion to make you want to bargain, You may lash at God or a higher power, offer to do anything in exchange for relief from your feelings and illness.

Depression – Depression is not always a psychological condition, but a normal emotional reaction to loss. It usually happens when you are feeling overwhelmed and helpless. This may be a period of isolation and loneliness during which you process and reflect on the loss.

The upward turn – This is a new stage that reflects the ups and downs of grief and recognizes that there is a point that things do indeed improve. During this stage anger and pain have died down, and you’re left in a more calm and relaxed state.

Reconstruction and working through – This new stage recognizes that you can begin to move forward before you have fully accepted your situation. You are now able to start putting pieces of your life back together and carry on.
Acceptance and hope – This stage now combines the feeling of hope with acceptance. For those facing the end of their life it is the time when you accept the prognosis and begin the process of making life more comfortable.