Receiving a terminal diagnosis and starting hospice can take an enormous toll on the patient’s mental health. With roughly 14.5% of adults over the age of 50 living with a mental health issue and rising risks of isolation, loneliness, and opioid abuse, mental health is a growing concern for hospice patients.
While looking out for symptoms of poor mental health in patients, it is also important that caregivers be mental health advocates for patients. Compassionate hospice care improves a patient’s overall quality of life, addressing both physical and mental health. But, caregivers and families should do their part to be on the lookout for mental health concerns and advocate for treatment so the care team can provide that compassionate care.
We’ll discuss common mental health issues for hospice patients and their families, and how families and caregivers can advocate for their loved one’s mental health.
What are common signs of mental health disorders in hospice patients and the elderly?
There are some common issues that patients can experience during hospice that caregivers and families should recognize. Should these symptoms become worrisome, families and caregivers should alert the patient’s care teams. Care teams can provide assistance for caregivers and families and adjust treatment plans to help.
Mood swings
Patients nearing end-of-life may suffer from severe mood swings and personality changes. They are often unaware of these changes, so it’s important for caregivers and families to be understanding and patient with their loved ones.
Hospice patients may lash out in anger at their loved ones with harsh words or actions, and it’s vital for families and caregivers to understand that the patient’s actions are not personal. Patients may simply be expressing frustration, embarrassment, or discomfort, and are unable to express it another way.
Anxiety
Anxiety and restlessness are extremely common for patients in hospice care. Unresolved issues, worries about what happens after they’re gone, and a fear of death can cause patients to have anxiety. Many times, the care team can provide anti-anxiety medication as part of the treatment plan, but it can also be helpful to provide soothing or favorite music, reading together, talking about favorite memories, and engaging in mindfulness practices to ease anxiety.
End-of-life confusion
As a patient’s body prepares itself for end-of-life, core functions start to change, slow, or stop completely. The ability to process cognitive thought is often one of those core functions that changes. Because of this, hospice patients may become confused, delirious, or mentally impaired. This is sometimes called “end-of-life confusion,” as patients lose awareness of their surroundings, have a shorter attention span, develop abnormal speech patterns, or lose spatial awareness.
These symptoms can be difficult to treat, so the best path is to manage them. Caregivers and families can do things like speaking slowly and softly when the patient is confused, listening and validating what they’re experiencing, or patiently sitting with them and talking with them to ground them.
Visual or auditory hallucinations
Another common mental health experience for hospice patients is the instance of hallucinations. Patients may hear or see things that aren’t there, and it can be distressing not only for them, but for families and caregivers as well.
If your loved one is experiencing hallucinations, it’s important to not talk them out of it. If you push back on them or say that what they’re experiencing is not real, the patient may become combative or experience more anxiety and depression. If you’re able to, talk with the patient, ask questions, and listen. These hallucinations can be an important part of the process of dying, so be a calming presence as best you can.
How can you be a mental health advocate for hospice patients?
When a loved one in hospice care develops mental health issues, it can seem like another difficulty on top of a mound of difficulties. However, there are things caregivers and families can do to advocate for the patient and their care.
One of the most basic things caregivers and families can do is to inform the hospice care team of their concerns. Care teams are built to handle any issue that comes their way, and that includes mental health issues. Care teams include people who specialize in mental health, spiritual care, or counseling. These social workers, spiritual care coordinators, and bereavement coordinators are there to help patients, caregivers, and families navigate the mental weight of the end-of-life process, find acceptance, and provide hope. Many families have never navigated the dying process before, and these specialists—along with hospice nurses and doctors who can address the medical side of things—can help. Don’t be afraid to reach out to the care team if you have concerns about the patient or yourself. They can provide caregivers with a break from care, a kind listening ear, or resources for assistance.
Another easy way to be an advocate for patients is by providing basic emotional support. Being a presence for your loved one can ease their anxiety and depression. Listening to the patient’s concerns, worries, and fears, and talking them through their emotions can be a tremendous help in lowering stress levels. Caregivers can also provide a calm, reassuring atmosphere for the patient by playing their favorite music, keeping lights low, helping the patient meditate, or helping them write letters to loved ones. All these steps can help the patient process what dying means to them and can ease their mental health.
Normalizing mental health conversations can be of great benefit to patients and families alike. Patients and their families are going to go through a wide range of emotions during the hospice care process. If everyone involved normalizes talking about mental health from the start, then there is a higher likelihood of their being able to process grief and other emotions. The more open caregivers, families, and patients can be (as they’re able), the more likely everyone will be able to ask for the help they need and advocate for their loved one.
Be a vocal advocate
By being familiar with common symptoms of mental health issues and being an empathetic presence in a patient’s life, caregivers and families will be able to address issues as they arise and advocate for care more easily. Remember that hospice care teams are there for the patient and families alike, and social workers, spiritual care coordinators, and bereavement counselors are available for families up to 13 months after a loved one has passed.
It is important to utilize that help if you need it. The more steadfast families can be, the higher the quality of life for the patient will be during end-of-life. Talk to the specialists and advocate for one another when you or your loved one have concerns––it will benefit everyone.
