What Causes Mental Illness at the End of Life?
Struggling with your mental health during the end of life is difficult but common. In this stage of life, it is natural for humans to feel scared, uneasy, or sad. Still, it is lonely if you’re the one struggling.
Struggling with your mental health during the end of life is difficult but common. In this stage of life, it is natural for humans to feel scared, uneasy, or sad. Still, it is lonely if you’re the one struggling.
It can also be challenging for loved ones who want to support you but aren’t sure how. As a caregiver of someone who is terminally ill, you can educate yourself on what might contribute to mental distress and learn how to support your loved one’s mental health during their final days.
What Causes Mental Illness at the End of Life?
Dying brings up a roller coaster of feelings. Your loved one may feel a range of emotions at varying intensities on any given day. When anxiety and depression set in and don’t leave or get worse, several factors could be contributing to a decline in mental health.
Loss
Your loved one has experienced multiple losses in a short period, including losing their health, relationships, and independence. These losses accumulate over time and can lead to end-of-life anxiety and depression.
Fear of the unknown
The uncertainty of death can also contribute to struggles with end-of-life mental health. Your loved one may fear death. Anxiety, panic attacks, and depression are common responses to things that are scary or out of our control – including death.
Loneliness
Dying is accompanied by many emotions that are unique to each person’s journey. A common one is loneliness. There are several types of loneliness experienced during the end of life, including:
- Social: With a decline in health, you may not be able to socialize with friends and family like you used to. This can cause social loneliness.
- Emotional: Even in the presence of loved ones, you may feel lonely. Emotional loneliness can occur when you feel like you can’t express how you’re feeling, and people around you don’t understand what you’re going through.
- Existential: Existential loneliness is the awareness that even if you’re surrounded by those you love, death is something you have to experience on your own. It can feel very isolating.
Physical discomfort
Dying is uncomfortable. Changes in temperature, medication side effects, pain, and restlessness can accompany death. These physical discomforts can contribute to symptoms of anxiety and depression in individuals who are in their final days.
Regret
Being near death has a way of bringing to light things we may regret in our lives. It could be something we wish we would have or wouldn’t have done. A relationship we never mended, an adventure we never took, or family we saw too little. If your loved one is experiencing regret or remorse, take time to communicate forgiveness and reassure them they led an abundant life.
What is End-of-Life Anxiety Disorder?
Anxiety is a natural reaction to events in our life that cause stress and uncertainty, including death. But, treatment is necessary when anxious thoughts consume our daily lives and interfere with our relationships.
Anxiety before death is quite common. By interviewing caregivers after their loved ones had passed, a 2019 study found that 46% of caregivers reported their care recipient had moderate-to-severe anxiety in the last week of life.
Symptoms of end-of-life anxiety
Some patients nearing the end of life experience mild anxiety, while others have severe panic attacks. Symptoms of anxiety in hospice patients look different from person to person. Some signs of end-of-life anxiety include:
- Difficulty focusing
- Insomnia
- Irritability
- Increased heart rate
- Nervousness
- Sweating
- Emotional outbursts
- Tenseness
- Constipation/diarrhea
- Nausea
What is End-of-Life Depression?
Major depression — or major depressive disorder — is a mood disorder that causes perpetual feelings of sadness and hopelessness. One study estimates that 5-20% of cancer patients meet the diagnostic criteria for major depressive disorder at the end of life.
At the end of life, depression can sometimes be misinterpreted as grief. The difference is, depression leads to significant suffering, is accompanied by physical symptoms, and can cause thoughts of suicide and actions to hasten death.
Grief comes in waves and generally improves with time, while depression is constant and affects all aspects of life.
Signs of end-of-life depression
- Pervasive sadness and hopelessness
- Changes in sleep
- Weight loss or weight gain
- Emotional outbursts
- Suicidal thoughts
- Changes in eating habits
How a Caregiver or Hospice Care Team Can Help
Dying is a spiritual, physical, and emotional journey. And caregivers play an integral role in supporting their loved one in their last days. This includes addressing mental and emotional distress in your loved one. Here’s how –
Start honest conversations
Talking can take a lot of strength and courage, especially talking about your own death. Ask open-ended questions, such as “Can you tell me how you are feeling?” instead of “You seem really sad today.”
Open-ended questions allow your loved one to lead the discussion and express their own thoughts and feelings. They can share as much or as little as they feel comfortable with, strengthening their trust with you.
Encourage them to talk to a professional
Hospice chaplains are a deep well of comfort for many patients and families. Regardless of religion, they help patients find spiritual peace at the end of life. This pervasive peace is often a soothing balm for anxiety and fear around death.
If you’re on hospice care and would like to speak to a professional about your emotions, reach out to your care team about visiting with a hospice chaplain.
Consider medication
Medication adjustments can reduce symptoms of anxiety and depression. Your loved one may need their pain medication adjusted to promote comfort and relaxation, which may reduce tension and anxiety.
Speak with your loved one’s medical caregivers if you feel that their mental state is worsening. Getting the appropriate, timely treatment preserves the quality of the time you have left with them.
Have realistic expectations
Do what you can to support and advocate for your loved one’s mental health, but you can’t expect them to be chipper every day. Savor the moments when you have good conversation and they are at peace, and accept that some days will be more difficult than others.
Consider Hospice Care
If you’re living with a terminal illness, you deserve to live the last days of your life free of depression and anxiety.
Getting help starts with an open conversation with your circle of family, friends, and healthcare providers. Let them know you’re struggling and want help. Hospice offers medical, social, emotional, and spiritual support for you and your family, so you can live comfortably in your last days.
Resources
- Ettema, E.J., Derksen, L.D. & van Leeuwen, E. Existential loneliness and end-of-life care: A systematic review. Theor Med Bioeth 31, 141–169 (2010). https://doi.org/10.1007/s11017-010-9141-1.
- Morrow, Angela. “Symptoms and Management of End-of-Life Anxiety.” Very Well Health, 25 January 2020, https://www.verywellhealth.com/managing-anxiety-1132473.
- Shaw, Gina. “End of Life: Coping with Anxiety and Depression.” WebMD, 03 November 2021, https://www.webmd.com/palliative-care/end-of-life-coping-with-anxiety-and-depression
