Terminal Illness Support

It may be beneficial for someone living with a terminal illness to create a bucket list or a wish list of things they hope to achieve before they die. These goals can be simple, random, or grand ideas: take a trip, stay in a luxurious hotel, visit a special place, try something daring, renew wedding vows, learn something new, see a live concert, attend a sports match, or reconnect with someone special. The ideas are as endless as one’s imagination. Simply writing them down may spur a sense of pleasure whether any of them are attainable or not.

Current research based on open-ended questionnaires completed by terminally ill patients revealed some common themes for wish lists. Immediate goals included taking care of final matters, regaining health, and dying comfortably. But the majority of wishes were more personal, and related to travel, activities, or spending time with family. These results are nearly identical to those gathered from a similar study conducted by Stanford University in 2018. Both studies suggest that asking patients to share an end-of-life bucket list would be an ideal framework for more person-centered care by physicians.

The idea of creating a bucket list was catapulted into the spotlight with the release of the film, The Bucket List, in 2007. The movie stars Jack Nicholson and Morgan Freeman. Both are terminally ill and leave the hospital together on a journey to check off their lists of life goals. 

Although Nicholson’s character was well-off enough to pay for their excursions, not everyone has the financial ability to make a special dream come true. Fortunately, many Make-A-Wish Style Programs exist that help terminally ill adult patients achieve one special item on their bucket list. These non-profit organizations provide funds and help coordinate the activity the person desires. In some cases, they will incorporate family members in the wish as well, allowing the dying person to spend time creating new memories while doing something enjoyable.  

Sources

“What are the personal last wishes of people with a life-limiting illness? Findings from a longitudinal observational study in specialist palliative care.” BMC Palliative Care. https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-022-00928-1

Legacy projects, bucket lists, rituals, and spiritual or religious practices are all meaning-making activities that offer opportunities for reflection, conversation, and a pathway toward acceptance. These activities can provide a sense of comfort and emphasize the value and importance of the connection shared with your loved one. Although the following suggestions are common choices for meaning-making activities, personalizing and customizing your activities to your relationship with your loved one is also greatly encouraged. 

One of the most common meaning-making activities is working on a legacy project with your loved one. This can involve creating a photo album or scrapbook that details important milestones and cherished memories throughout their life or making video and audio recordings of stories about their personal experiences. Asking them to write a letter to you or other loved ones can be another activity that creates a tangible memory or reminder of a legacy that you can revisit at a later time. These types of activities help your loved one to reflect on their own legacy while also providing opportunities for other loved ones to better understand their life experiences. 

If your loved one has a bucket list of experiences that they would like to have before the end of life, participating in these experiences together can be another great way to maintain their legacy. Your loved one might have unique interests or hobbies that you only associate with them, and this is an opportunity to share those moments with them. At the same time you will be supporting their ability to achieve a greater sense of accomplishment and quality of life. If your loved one struggles with mobility, try thinking of creative ways that you can help them achieve the goals and experiences on their bucket list. 

Sharing in spiritual or religious practices together can also contribute to the meaning-making process if your loved one is a person of faith. This might involve meditation, prayer, discussing beliefs and values, reading sacred texts, or singing hymns or chants. Engaging in these activities with your loved one can help them find peace and meaning within their spiritual or religious traditions while also serving as a way to deepen their connection with you through the shared experience. 

Finally, gathering together with your loved one and other family members or friends to focus on planning for the rituals or ceremonies that will take place after death can also be a meaning-making activity. Although it can be difficult to discuss these topics with your loved one, including them in the planning discussions and arrangements can provide them with the opportunity to share their preferences about how they want to be remembered and honored after their death. 

Sources:

“Spirituality in Patients at the End of Life – is It Necessary? A Qualitative Approach to the Protagonists.” National Library of Medicine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8751211/ 

“62 Inspiring and Exciting Bucket List Ideas for Cancer Patients”. OmniCare Hospice. https://omnicarehospice.com/bucket-list-ideas-for-cancer-patients/ 

“How to Bring More Meaning to Dying”. Greater Good Magazine. https://greatergood.berkeley.edu/article/item/how_to_bring_more_meaning_to_dying 
“Legacy Activities”. Hospice Waterloo Region. https://www.hospicewaterloo.ca/legacy-activities/

Supporting someone with a terminal illness may require some mental, emotional, or spiritual preparation. When we know someone is facing a life-threatening illness, it can spur us to question our own mortality in a way that may feel uncomfortable. Fears and personal feelings can surface. Or, we may feel anticipatory grief as we grapple with the loss of someone we care about.

But supporting someone at the end-of-life can be as simple as meaningful gestures or thoughtful words. Caring about how we might positively affect another human being is a noble, beautiful, and caring thing to do. Whether it is a loved one, friend, neighbor, or acquaintance, doing what we can to help them overcome an immediate struggle or to brighten their day can bring a sense of joy to both the giver and the receiver. 

While there are no right or wrong ways to support a person with a terminal illness, below are a few suggestions that can help someone to navigate this sensitive territory.   

Mindful ways to offer support 

• Convey that you care, even if you do not know exactly what to say.

 “I’m sorry that this is happening to you,” or “I’m here if you need to talk to someone,” are good ways to express that you care.

• Assure them that they can depend on you.  

Be specific about how or what you can do for them. Perhaps offer to help before help is needed. For example, “Can I bring a lasagna for dinner on Thursday for you?” or “I’m headed to the store to pick up your favorite snack; what else do you need that I can bring to you?” 

• Let them know how they have positively impacted your life.

Sharing what makes your relationship with this person special can be a meaningful experience for them, as well as you.

Phrases to Avoid

• Trite phrases such as, “I know how you feel.” “It’s going to be okay.” “You’ll beat this thing.”

 These are things we say when we want to reassure someone that all is well. However a terminal illness is just that, terminal. Do your best to avoid using these phrases as a means of conveying comfort. 

• “I will pray for you.”

Although it is meant to be comforting, an offer of prayers can be construed as meaningless or even offensive to someone who is not spiritual or religious. If you are not sure about their beliefs or views on God, death, or the afterlife, perhaps ask, and then offer to listen. If it seems appropriate, you can offer to pray with them instead of merely for them.

• “See you tomorrow/next week.” 

Disease progression in terminal illness can be very unpredictable. Try not to mention a specific time when you will return. Instead, say something, like “I will check back on you soon.”

Offer compassion and a listening ear

Your friend or loved one is a person with an illness, not an ill person. The diagnosis is not their sole identity, and they may still enjoy participating in many activities they enjoyed before they became seriously ill. Do your best to include them whenever possible. Continue to invite them to events, even if you suspect they may not be physically able to attend them. And although they may need more help as their disease progresses, don’t treat them as if they are helpless. Maintaining some level of independence as long as possible can help someone to retain a sense of dignity, self-worth and quality of life. 

Overall, the best thing you can do to support someone with a terminal illness is to engage in active listening. Follow their lead. Be patient. If they want to share their thoughts, feelings, or fears – listen without judgment. Meet them where they are. Maybe hold their hand. 

Being present is the greatest gift you can give.

Sources

“What Is Active Listening? Psychology Experts Share 5 Steps to Enhance Your Communication Skills”. Good Housekeeping. https://www.goodhousekeeping.com/health/wellness/a39601657/what-is-active-listening/

There are various types of support groups available to people diagnosed with a terminal illness. Support groups can be social-media oriented, online forums, zoom meetups, telephone chat lines, or conducted in person. Groups may be open to all or only to those who meet certain criteria (for example, a specific diagnosis). Meeting intervals can vary from weekly to monthly or as needed. Regardless of the format, support groups can be a valuable outlet for those who feel uncertain or anxious about what comes next.

Choosing which group is best suited to your needs will depend upon the type of support you are seeking. Do you need emotional support? Would you feel comfortable sharing and learning from others with similar experiences? Perhaps you prefer to receive guidance from a professional facilitator? Or, maybe you just want some education or tips about how to cope with your disease and decline. Identifying what you are looking for will help you find a group that works for you. 

You should also be aware that some support groups may be designed for those with a specific disease, such as breast cancer or heart disease. There may also be age-specific groups or those that are open to caregivers as well as patients. 

Support group formats can also vary. Some of the most common include:

• Peer-led or self-help group — members lead and facilitate discussion among themselves
• Professional-led groups — a trained professional (counselor, social worker, psychologist, therapist) leads the dialogue among members
• Informational – a professional facilitator or guest speaker offers expert advice to educate participants.
• Online forums – many groups offer full autonomy if you wish to remain anonymous when posting

Benefits of Support Groups for Terminally Ill Patients

Although no formal studies have been conducted on the impact of support groups for people living with a terminal illness, Ariel Young of Portland State University in Oregon offers a literature review in her thesis: The Impact of Support Groups for People with Terminal Cancer on Preparatory Grief.

Her review of currently available research indicates that support groups can help terminal cancer patients develop more effective coping strategies when they have been aided in expressing their grief over losses which occur early on in the illness. These coping strategies include constructive emotional expression, managing physical symptoms, and maintaining realistic optimism about what remains of life. The author concludes that better coping habits may contribute to a longer survival time. 

Other benefits of participating in a support group may include:

• Fostering a sense of community; feeling less lonely or isolated
•  Reducing feelings of distress, depression, or anxiety
•  Positively affecting others (which can positively impact yourself)
• Improving an understanding or your disease experience
• Getting practical feedback about palliative care options
• Learning about valuable health or community resources

Where to Find a Support Group

There are many ways to find a support group to help you cope with a terminal or life-limiting diagnosis. As a first step, you may wish to:

•  Call your local hospital system or cancer center to ask about their support programs.
• Ask your physician, social worker, or nurse to suggest groups.
• Talk to other patients; ask if they have recommendations.
•  Do an online search for groups related to your diagnosis in your local area.

You can also check with an organization that offers resources and support for people living with your diagnosis. See our Additional Resources to learn more. 

Sources
“Life Near Death: The Impact of Support Groups for People with Terminal Cancer on Preparatory Grief” . Portland State University. https://pdxscholar.library.pdx.edu/cgi/viewcontent.cgi?article=1063&context=honorstheses