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The idea of losing a loved one is heartbreaking, and losing someone to a terminal illness is no exception. Cancer, Alzheimer’s, heart conditions, brain death due to trauma, and other diagnoses often lead to a moment when there are no more treatment options. At this point, doctors sit down with families and share the heavy news that their disease is no longer curative. It is time for comfort care*.
Sometimes, “do no harm” means no more medical interventions and creating space for a peaceful death. Part of a peaceful death, however, is having difficult discussions over end of life with everyone who loves the person.
Professionals in the deathcare industry can share the following advice with loved ones to help guide these conversations and provide comfort and support to those facing terminal illnesses.
Honesty Heals
No matter the relationship, it is always important to be honest with the person who has learned they are dying, and with everyone who is close to them. A terminal illness is often an elephant in the room, but it is healthy to address the elephant. Talking about fears, worries, sadness, and anger surrounding a terminal illness sets a firm foundation for grief after death and for beautiful memory making during the dying process regardless of how long the dying has left.
It can hurt to hear, “I am dying.” It can also hurt to say out loud that a loved one is dying. Saying it makes it real, but saying it also gives everyone permission to start grieving and planning.
Anticipatory Grief
Anticipatory grief is a common yet not often addressed type of grief. It occurs when people are grieving something or someone that is not yet gone but will be, and they grieve again after the death. For instance, when someone is diagnosed with Alzheimer’s, those who know them grieve each stage as their memory fades. They grieve a person who is right in front of them. With a terminal cancer diagnosis, people grieve the future loss while still trying to live as much of a normal life as they can muster.
This grief can be normalized by naming it. When someone is caring for a loved one who is dying, or they are the person dying themselves, it can be validating to open a conversation on the unimaginable pain of grieving a death that will happen in the near future. It is a difficult conversation, for sure, but addressing anticipatory grief and holding space for those feelings can be incredibly powerful.
Memory Making
Part of anticipatory grief and helping others both process and accept that they are dying – or that their loved one is dying – is creating space for memory making. When people are encouraged to discuss an illness being terminal, it gives them the gift of time and memories.
Depending on the ages of both the dying and the loved ones, memory making can look different but with the same lasting impact. Families can make fingerprint trees, tell stories, go on a dream trip, try a food or activity they have always put off, or visit a favorite spot one last time. The dying person can also have time to share their final wishes while family and friends express hopes and fears, and heal emotional wounds.
A Good Death
Chaplains, funeral directors, providers, and any others who care for people at end of life and beyond, often discuss the importance of a “good death.” It may sound like a harsh statement, but there is a goal for beauty and peace within it. A good death means giving time and space for both the dying and grieving to be angry, sad, confused, afraid, hopeful, and to share stories. It allows for “goodbyes” and wishes to be met.
Terminal illnesses often come after months or years of treatments, a continued decrease of control over decisions, and a loss of independence. A good death gives back some agency to the dying and their loved ones. This time of anticipatory grief can be a gift when all those around the dying can find the strength to have the difficult discussion about impending death. The patient is more likely to die peacefully and in less physical, emotional, and spiritual pain. Their loved ones can feel they did all they could for them and begin the grief process in a healthier way.
*Note: In pediatrics, comfort care and curative care can be congruent, but hospice care for adults requires that curative measures cease.