What to Say: Late-Stage Illness
Comfort and love are key when supporting someone facing late-stage illness.
Comfort and love are key when supporting someone facing late-stage illness.
Nathaniel Glanzman
Reviewer URLComfort and love are key when supporting someone facing late-stage illness.
What we'll cover
Late-stage illness is physically, mentally and emotionally challenging. An individual experiencing late-stage illness may experience worsening symptoms and become increasingly reliant on caregivers for their medications, personal hygiene and nutrition. Your loved one and/or their caregiver needs to make and implement important medical and logistical end-of-life decisions. An individual may also be coming to terms with the end of their life, reflecting on their experiences and relationships.
As a friend or loved one of someone experiencing late-stage illness, it is important to provide comfort during this particular time of need. Your emotional and logistical support at the end of their life can be an incredibly meaningful experience for you both. While you can’t change their situation, you can play a role in making their final days as peaceful and comfortable as possible. This is your last opportunity to spend time together and express your love for them through kind words and acts.
In this “What to Say” guide, we’ll cover what a person may face when experiencing late-stage illness, what needs they may have, what to say to support them and other ways to help. You’ll learn more about your loved one’s experience and how to provide as much comfort and support as possible for this particular time at the end of their life.
What it is
Someone experiencing late-stage illness is facing the end of their life. Medically speaking, their illness has reached a point where treatment is no longer advisable or desirable.
From an emotional standpoint, your loved one may be processing complicated feelings about their relationships with family and friends, life experiences or their state of health. They may also spend time appreciating happy memories. It’s important that a person facing late-stage illness has space and support. They may find peace in their dying process through acknowledging this spectrum of emotions and experiences they’ve lived through.
According to the Mayo Clinic, one should not “assume that the person will go through a methodical process of coming to terms with death. The most desirable outcome might be that your loved one learns to live as fully as possible while accepting the presence of a terminal illness.”
This time will look different for every person, depending on their individual needs and preferences. As a supporter, you should not pressure your loved one to do more treatments or perform in a way that aligns with what you may want for them. It’s important to respect their wishes and provide as much comfort as you can for the end of their life.
What they need
According to the National Institute on Aging (NIA), “people who are dying need care in four areas: physical comfort, mental and emotional needs, spiritual needs, and practical tasks.” Staying attentive to your loved one’s unique needs can go a long way to make this time as comfortable as possible for them.
Your loved one’s medical needs will depend on their particular illness. In general, their care will likely involve specific providers helping them with pain management, nutrition, personal hygiene, wound management and medication administration.
Your loved one may opt for hospice care to ensure comfort for the dying process rather than continuing to treat their illness. During hospice care, a dying person no longer receives medical treatment intended to stop or slow the progression of their illness. Their care is now focused on comfort to ease their end-of-life transition. According to the NIA, patients typically receive hospice care when their physician believes they have “six months or less to live if the illness runs its natural course.”
Hospice care can include assistance with feeding and personal hygiene as well as administering medication for pain relief. Hospice care may involve a range of specialized hospice nurses, doctors and spiritual advisors. It can take place at an individual’s home or in a dedicated medical facility.
Staying present
It’s important to remain present for your loved one however you can, even if you don’t always know exactly what to do or say. “Your presence can be the greatest gift you can give to a dying person,” adds the NIA. When you’re unsure of what to say, practice active listening. Allowing your loved one to experience and talk about their emotions can help them feel less alone.
Remember to continue engaging with your loved one, even if communication challenges arise. They may lose their ability to communicate verbally if they are experiencing dementia or other disease progression. Patience, compassion and visual cues can go a long way when navigating these challenges. Speak to them directly, make eye contact with them, and hug them or hold their hand if possible.
What not to say
First, let go of any assumptions about your loved one’s experience and how they may feel about their illness and death. This is a time for you to listen with love and compassion before jumping to any conclusions. Here are some examples of what not to say to someone experiencing late-stage illness.
“It will be OK.”
Why it doesn't work: This statement denies the reality of your loved one’s situation. As much as you may wish this wasn’t the case, the truth is that they are nearing the end of their life. By denying or avoiding the fact that they’re dying, you may prevent them from acknowledging this time in their own chosen way. Instead, you can express your appreciation for spending this meaningful time with them.
“Let me know if you need anything.”
Why it doesn't work: Although this statement is well-meaning, it puts pressure on your loved one (or other caregivers) to organize something for you to do. If you’d like to provide practical support for your loved one’s care, be specific about what you can do and when. This is a much more direct and efficient way of contributing your time and energy to help them.
“I’m praying for you.” (Or any assumed religious or spiritual statements).
Why it doesn't work: Don’t assume that your loved one shares your religious or spiritual beliefs, particularly those around death and dying. Let them set the tone for these conversations, if they do come up. If you and your loved one already share a spiritual or religious practice as part of your relationship, follow their lead on incorporating it into your time together.
Nothing.
Why it doesn't work: Continue speaking to them, even if they aren’t able to do the same. It can feel particularly difficult to connect when your loved one can no longer communicate verbally. If this is the case, remember that your presence alone can still provide comfort for them. Leaving them out of conversations or not speaking to them directly creates more isolation and loneliness. Continue to speak to them lovingly, even if they are not able to respond or carry a conversation with you. Maintain the same physical expressions of love that you have always engaged in, such as hugging them or holding their hand.
"You should take this specific approach for your funeral."
Why it doesn't work: This statement takes important individual decisions away from your loved one. They might have very specific requests for this process, and it’s important that their wishes be honored. Don’t judge your loved one’s decisions about their death and dying experience, even if they are not consistent with what you would choose. Instead, engage in conversations about what is important to them and what they would like to happen.
What to say
It can feel impossible to find the words to say when someone is facing late-stage illness. Remember that you can’t change your loved one’s reality. Instead, you can make sure they feel listened to and loved during the time they have left alive. Here are some examples of what you can say to your loved one.
Note: These conversation starters are just suggestions. Each individual’s experience will vary and users should measure their words based on what they know and do not know about their loved one.
"How are you feeling today?"
Why it works: This is an open-ended question that removes any assumptions on how your loved one is doing. By specifying “today” or even “right now,” you’re acknowledging that their response can change over time, even within the same day. If they’re not doing so great right now, you can follow up with a specific offer to help or provide comfort.
“Whatever you are thinking or feeling, I’m here to listen.”
Why it works: This statement creates space and support for your loved one to express what they are truly feeling, including fear and other complicated emotions that may come up as they near the end of their life. This statement encourages them to process these emotions rather than hiding them. Practice active listening by making eye contact with your loved one and devoting your full attention to the conversation.
“Would you like to share some of your favorite memories?”
Why it works: Your loved one might find comfort in remembering meaningful experiences they’ve shared with you or other important people in their life. This statement provides an opportunity to express appreciation for and relive some of these cherished memories. You can connect with your loved one over these stories, even just by listening.
How to recover
Understandably, you may find it emotionally difficult to witness and discuss a loved one’s death and dying process. You don’t want to see them suffer, and you wish you could change their situation.
Even though you mean well, you might say something that causes unintended harm. Perhaps you tried to cheer your loved one up with a positive statement, but it missed the mark. When we use positivity in an attempt to cheer up a dying person, we may unintentionally invalidate their difficult end-of life-experience. Your loved one may feel like their reality is being dismissed with positivity, when they actually want to acknowledge that they’re struggling.
If you make a mistake, own up to it. Explain that you don’t like seeing them suffer, and your positive comment was an attempt to avoid difficult topics. Tell them that you want to provide a safe space to talk openly about their reality, and not just focus on positivity.
Other suggestions
If you’re unable to have a conversation with your loved one, there are still plenty of meaningful ways you can spend time together. Read to them from their favorite books, look at printed pictures together, listen to relaxing music or sit outside in the fresh air if they are able to do so.
Remember that caregiving is a team effort. You are an important piece of the puzzle, but no one person can fill all of your loved one’s physical, emotional, spiritual and practical needs. Consider working with professional caregivers and other support providers including death doulas, counselors, bereavement experts or spiritual advisors.