comscorePlanning Ahead for End of Life

Planning Ahead for End of Life

You may not be ready to read this material yet. It’s completely understandable. You can come back when you decide the time is right, or you can ask someone you trust to read it for you and talk to you when you’re ready.

If you’re thinking about stopping treatment for metastatic breast cancer, there are emotional, financial, legal, practical, and physical issues to consider. But preparing for death can be sad and frightening, and everyone handles it differently.

You may not be ready to read this material yet. It’s completely understandable. You can come back when you decide the time is right, or you can ask someone you trust to read it for you and talk to you when you’re ready. You also can ask your doctor or hospital social worker about resources — a therapist, clergy, or support group — who can provide emotional support.

 

Coming to terms emotionally with the end of life

Thinking about the end of life can raise difficult emotions for you and your relatives and friends. It’s really hard to accept saying goodbye to the life you’ve built and the people you love. There is a natural tendency to shy away from open and honest conversation about death — even doctors aren’t always comfortable talking about it. But there are so many benefits to having these conversations now:

  • You’re likely to feel more in control of what’s happening.

  • Your family, friends, and healthcare team can be clear about what you want.

  • You may find that talking about your feelings and having plans in place actually reduces anxiety and brings a sense of peace.

Coming to terms with the end of life means learning to accept it as a possible outcome. This is a process that people move through at different paces:

  • some are ready to begin as soon as they learn they have stage IV breast cancer

  • some aren’t ready until they’ve been through several courses of treatment

  • some aren’t ready until it’s clear there are no effective additional treatment options left

Whatever the timetable, it is an emotional process. And it takes time, according to Kelly Grosklags, LICSW, BCD, a Minneapolis-based oncology psychotherapist and grief counselor who has lots of experience helping people with advanced cancer deal with end-of-life emotions. She advises people to give themselves enough time to come to terms with the end of life: “It’s very beneficial to the person if they have been doing the psychological work along the way, talking about how this is feeling, prepping for what it might be like, talking about things they would like to do. As humans, we need time to process things.”

She adds that one feeling is very common in this experience: People fear they are somehow giving up once they start contemplating the end of life. They think they either can focus on treating the cancer or on preparing to die — but not both. Grosklags recommends replacing this either-or thinking with what she calls a both-and mindset. You can both work on coming to terms with the end of life and devote your energies to managing the cancer and living well day-to-day: keeping up with treatment, eating well, reducing stress, and being active. You can focus both on keeping the cancer under control for as long as possible and preparing for what you’ll do if treatments stop working. If at some point you decide to stop cancer treatment, you can both seek treatment for symptoms to live well and prepare for the end of life.

Common emotions about end of life

You may find yourself cycling through a range of different emotions as you come to terms with the end of life, from pain and sorrow to calm and peace. Feelings may change as time passes or even over the course of a single day. “You may find yourself balancing a bad morning with a good afternoon,” says Grosklags. “You can be sad one day and the next day be completely elated in the relief that you’re done with treatment.” You can both be anxious and fearful and feel a sense of calm. You may both grieve the loss of many years you expected to have and feel a sense of gratitude for the life you’ve had so far. There is no set pattern or playbook, and it’s all normal.

Here are some of the emotions that can come up and ways to manage them.

Anxiety and panic: Anxiety and panic are normal first reactions to understanding that breast cancer is likely to shorten your life. Initially, these feelings can be overwhelming. For a time, you might feel frantic and unable to think clearly. You might have trouble focusing your attention and sleeping at night. In Grosklags’s experience, medication can be helpful for many people: “A lot of the people I work with will take something so that they can be calmer and somewhat more clear in their thinking so that they can make the best decisions for themselves.” You can talk to your doctor or ask to see a mental health specialist who can help. Medication and therapeutic support can help you focus on your next steps medically without stopping you from doing the things that matter to you: enjoying social events, going on vacation, reading, or working.

“It’s important to reassure yourself that you’re not going to be abandoned, that there’s going to be a healthcare team, there are going to be support people that are going to see you through this,” Grosklags adds.

Fear: “Fear is rooted in the unknown future,” says Grosklags. Anything that we’re about to do for the first time — have major surgery, live through a natural disaster, give birth, start chemotherapy — has fear associated with it because we don’t know exactly what to expect. There’s so much we don’t know about the dying process. Some people may fear not feeling well or being in pain. Others may fear being forgotten by their loved ones or that their life hasn’t had the impact they wanted it to have.

Try to name what is causing your fear. If you fear being alone, tell family and friends that you want them to stay close. If you fear being forgotten, consider leaving them notes or recordings to remember you. If the dying process itself scares you, talk to your doctor or ask to speak with an expert in palliative care so you can understand what options there are to make sure you’re comfortable at the end of life.

Anger: You may find yourself feeling angry, perhaps questioning why you have been diagnosed with metastatic breast cancer after doing everything right, being healthy, and getting your screenings. Anger is also a normal reaction if, after being treated for an earlier stage of breast cancer in the past, you now have been diagnosed with a stage IV recurrence. It’s natural to feel angry if you’ve made it through treatment the first time. Some people may feel angry about having to rethink their plans for the future, whatever those may have been: retirement, a second career, more travel, celebrating children’s and family milestones.

“I think sometimes that people, especially women, don’t necessarily feel they have the right to be angry. But it’s a very common thing and it’s justified,” notes Grosklags. “I find that sitting with it and talking about it with people, and even having them say out loud what they are angry about — that can help diminish it.”

People can take their anger out on the loved ones who are closest to them. Try to remind yourself to direct your anger at the situation and the disease, not the people in your life.

Guilt and regret: Guilt and regret can come from different places. Some people feel they haven’t lived as healthy a lifestyle as they could have or didn’t have regular cancer screenings. Some feel guilty that their partners, children, or other loved ones are worried and adjusting their lives to care for them. These feelings are normal, but keep in mind that being diagnosed with metastatic breast cancer is no one’s fault. There is no reason for anyone feel guilty unless they hurt someone intentionally. If you feel the need to make amends with someone you hurt, you can certainly do that as a way of putting guilty feelings to rest. Otherwise, try to let go of guilt and regret so you can focus on the present day.

Loneliness: Facing a life-threatening illness can be isolating. No one can truly understand what you’re going through unless they’ve been there themselves. It can be hard to connect with family and friends as a result. Loved ones and friends who don’t know what to say might pull away. Some people feel completely alone and misunderstood. You may find it helpful to connect with others who have been diagnosed with metastatic breast cancer and understand what you’re going through, whether you do that in person or online. You can visit the Breastcancer.org Stage IV Discussion Board community to meet and message with others who are living with metastatic disease. You can also ask your healthcare team if they can connect you with a social worker, a counselor, a nurse, or an end-of-life caregiver who has worked with others in your situation and can provide advice and guidance.

Grief: Grief is a feeling of deep sadness in response to something or someone we’ve lost. You might grieve the loss of hope that the treatments were working. You might grieve the loss of years you expected to have in front of you. Losing the vision you had created for your future and having to adjust to a new reality can lead to feelings of grief. “Even if we know the news is coming, when it actually comes, the walls are let down,” says Grosklags, “and we may be crying tears that are 20 years old or 10 or 5 — stuff can just come to the surface.” It’s important to find someone who can provide an outlet for your feelings, whether it’s a healthcare professional or someone who is close to you and can let you give voice to your feelings of grief.

Depression: Some people develop full-blown depression, a clinical condition marked by long-lasting symptoms such as withdrawal from others and loss of all interest in activities they once enjoyed. Depression can cause incapacitating feelings of anxiety, worthlessness, and even despair. You can manage symptoms of depression with prescription medication, so don’t hesitate to ask your medical team for help. Your medical team also may have you work with a mental health professional who is experienced at helping people who face serious health conditions.

Many people experience positive emotions as they come to terms with the end of life.

Relief: Going for tests and imaging scans to see if the breast cancer is responding to treatment can feel like an emotional roller-coaster ride. Some people find a sense of relief in knowing that, at some point, they can step off the roller-coaster. They can finally give themselves permission to stop and channel their energies elsewhere — toward work or hobbies, family or friends, or other things that are important to them. This can be freeing, says Grosklags: “There’s a lot of focus on the negative part of coming to terms with the end of life, but there can be this sense of relief that ‘I don’t have to do this anymore,’ ‘I don’t have to wonder anymore.’”

Peace and contentment: You may find a sense of peace in the impulse to reflect on your life so far; the contributions you’ve made to your family, your workplace, or society; and whatever else you choose to do in the time ahead. “I’ve seen so many people go through three or four years of treatment and then I get to walk with them at the end of life,” Grosklags says. “Overall, there tends to be a sense of peace — kind of like, ‘I already knew this was happening.’”

 
There is nothing wrong in admitting that sometimes what we live with on a daily basis just breaks us. We can have a bad few hours, a bad few days, then pick ourselves up and move on, it’s all fine again. Then there are times when it feels like we have been dealing with this forever, and it’s just too damned hard. I have days where I just need to take a deep breath and hope I make it through the day without hitting anyone over the head with a chair!

Breastcancer.org community member

Getting emotional support for end of life

It’s important to get emotional support as you prepare for the end of life. It can be a family member or a close friend. There also can be other sources of support:

  • A social worker, psychologist, counselor, therapist, or other mental health professional who focuses on the needs of people with metastatic cancer. More hospitals are offering psycho-oncology services, which help people with the mental and emotional challenges of cancer. Your healthcare team often can give you recommendations.

  • Other people facing metastatic breast cancer, whether in an in-person support group or through a peer-to-peer matching program. Ask your doctor or nurse if your hospital offers these programs. Online message board support groups, like the Breastcancer.org Stage IV Discussion Board community, are another option. You can use them at your convenience, and sometimes it’s just easier to communicate about difficult topics in writing rather than in person. There also is the organization Living Beyond Breast Cancer, which offers an annual spring conference called Thriving Together where people living with metastatic breast cancer can meet and participate in a variety of programs and sessions.

  • Members of the clergy or other spiritual leaders, if you know someone you trust, can offer guidance.

  • A friend, coworker, or acquaintance with whom you can talk, perhaps because they’ve experienced a life-threatening illness or helped someone through it. Some people find that individuals who are not necessarily their closest friends step up in unexpected ways and provide the support they need.

If you’re really struggling or feeling stuck, consider seeking professional help. For intense anxiety or depression that takes over your life and interferes with eating, sleeping, and other everyday activities, medication can be a helpful treatment. Antidepressants or anti-anxiety medications can be critical to getting back on an even footing. These medications may just provide a bridge as you adjust to the news of the diagnosis and organize your thoughts and plans. Or you may benefit from taking them over the long term. Don’t hesitate to raise the possibility of medication and professional therapy with your medical team.

Personal Quote

“The first year I was diagnosed, I was a jumble of emotions that took me months to sort out. Between the oncologist and my primary physician, I was prescribed numerous antidepressants that gave me horrible feelings. I finally had a revelation that I was not really depressed; I was experiencing anxiety and the antidepressants were worsening the condition. Once I was able to define what I was feeling, I was prescribed the right type of anti-anxiety meds and it helped make all the difference.”

— Breastcancer.org community member

 

Defining how you want to spend your time

At first, a life-threatening illness can make anyone feel powerless. But you can take back control of your life by making a plan for how you want to use your time. If you’re feeling well, this can mean doing something you’ve always wanted to do: travel more, visit long-distance family or friends, take a class in something that interests you, pursue a creative hobby, volunteer, finish a project, or donate time to important causes.

If you’re not feeling well because of the cancer and its treatment, you can still be intentional about how you spend your time, says Grosklags. She notes that people may find greater meaning and contentment in simple pleasures: tending a garden, spending time with close family or friends, enjoying their pets, appreciating the woods or the beach or other natural surroundings, really noticing the change of seasons, reading, listening to music, or countless other enriching activities. “When people have a limited time frame, what they enjoy in life can get more intense, and it can be very simple,” she says. “Their world gets smaller — it just does — and they embrace the simplicity, which I really admire.”

Whatever plans you make, you may find yourself sharing the concerns that Grosklags says are very common among her patients with advanced breast cancer:

  • “I don’t want to be forgotten.”

  • “I want to know that I mattered.”

  • “I want my family to know I love them.”

She notes that many people find it helpful to create keepsakes for their partners, children, grandchildren, or other loved ones to help keep their presence alive in these people’s lives. Examples include:

  • letters meant to be opened on special occasions, such as birthdays, wedding days, anniversaries, the birth of a child, and other life milestones

  • recorded audio or video messages for the same purpose — such as the reading of a favorite children’s book for a grandchild or messages of advice or congratulations

  • a memory book of photos — getting some of those photos off the computer or smartphone, or even out of the drawer (in the case of older prints), and collecting them in a book

If you choose to create something, it doesn’t have to be fancy or elaborate. It can be as simple as leaving voice or video messages for loved ones on a smartphone or tablet. Make sure to choose a trusted point person who can deliver these communications in the future, especially if they’re for children or grandchildren. If you have personal items you want to leave to certain loved ones, you can make a plan for that, too. These activities don’t have to take over your days; you can work on them a little bit at a time, even as you continue to pursue things you enjoy.

There may be other things you want to accomplish:

  • If you’re still working, you might have projects you want to finish or specific goals you want to meet. You may find it helpful to create a guidebook for your successor, employees, or department.

  • This is a good time to create legal documents such as a will, an advance directive, or a power of attorney, if you haven’t already done so.

  • If you’re ready, you also can create a plan for your funeral or memorial service. This is a deeply personal experience, and it can make things easier for your loved ones to know what your wishes are.

Personal Quote

“I have been stage IV for a little over two years. My daughter is 25 and my granddaughter will be 4 soon. I’ve been collecting poems and quotes in a notebook for my girls along with short notes from me. I find it very hard to write in at times, but I know that if I had one from my mom that I would still treasure it. The very first quote I wrote in it: ‘Worrying doesn’t take away tomorrow’s troubles.... It takes away today’s peace.’ —author unknown.”

— Breastcancer.org community member

 

Deciding if, and when, to stop treating the cancer

As time passes after a metastatic breast cancer diagnosis, many people find their lives falling into a pattern of “treat, scan, repeat.” A treatment plan works for a while and imaging scans look good — until suddenly they don’t. Then you and your doctor work together to come up with a new plan, and the pattern starts all over again.

Naturally, it can be scary to ask what comes next for you when treatments stop working or become too difficult. Sometimes, a person’s family, friends, and even members of your medical team might encourage a rosy, chin-up attitude. It’s not uncommon to feel some discomfort about this subject matter, and some loved ones might avoid frank and honest conversation. But it makes sense to consider what you might do when the side effects (and stress) of constant treatment outweigh its benefits.

Some people worry about having a conversation about end of life with their medical team because it may suggest they’re not fully committed to their treatment plans. However, it’s an important conversation to have, even if it still seems far down the road. You can explain that you understand you have treatment options that you’re ready to explore, but that you would like to plan for what might happen in the future.

“One thing I hear a lot is, ‘I don’t want to disappoint my doctor,’” says Grosklags. “It’s understandable but it’s not anyone’s job to take care of their healthcare team. And frankly, physicians can be relieved when a patient brings this up first.”

Here are some questions to consider asking your treatment team. It’s fine if your answers change over time. The most important thing is to get the conversation started.

  • Do I want to continue treating the cancer no matter what, even if the benefits are small and the side effects become hard to manage? Maybe there’s a milestone you want to reach in the future, such as a child’s graduation, a wedding, or another important personal occasion. Or maybe you’re not comfortable with stopping treatment if there is at least some benefit. Ask about working with a palliative care team who can partner with your medical team to help you manage side effects.

  • If the side effects of treatment start to outweigh the benefits, would I consider stopping treatment? Side effects can take their toll. So can the repeated stress of going for imaging scans and other tests to see if the cancer is responding and then waiting for the news. Some people reach a point where they decide that the downsides of cancer treatment outweigh any benefits. Grosklags notes that this decision often brings a sense of relief and even freedom to her patients. They have more energy to do the things they want to do and quality of life improves. Even though some family and friends may see this as quitting or giving up, Grosklags says, people generally arrive at this decision only after they feel they’ve done everything possible.

  • How do I know when the time is right to even think about stopping? Grosklags finds that intuition is a powerful guide for most people: They can sense that the cancer isn’t responding despite multiple courses of treatment. If imaging scans show the cancer is progressing and symptoms such as pain and fatigue are worsening, these can be signs as well.

  • If I decide to stop treatment at some point, what’s next for me? Stopping treatment for breast cancer is not the same as stopping treatment entirely. The care plan changes focus from treating the breast cancer to treating your symptoms so you can live well. Your doctor might recommend that you start working more closely with the palliative care team and then shift to hospice care. Many of us think of hospice as a place for people in their final days of life, but that’s not entirely accurate. Hospice is a care approach that focuses on helping people live well at the end of life — physically, mentally, and emotionally — and can be delivered at a care facility or in the home. In the United States, the average time in hospice care is just seven days, meaning that patients often don’t get the full benefit of what it has to offer: symptom relief, emotional support, and family support. Considering hospice sooner makes sense for most people, even if they’re not quite ready to stop anti-cancer treatments. Often it becomes evident that hospice can help not just with the physical process of dying, but also with the emotional suffering and anguish that comes before it for many people and their families.

    “People sometimes feel like they’re going to lose their control in hospice, but I actually see them gaining more control,” says Grosklags. “They’re not asked to give up their lives. If they’ve always gone to the lake in July, then they can do that. In hospice, we get very focused on one question: What do you want the rest of your life to look like? Every person living with cancer has a wealth of information internally — what we call intuition. The quieter we are, the more we can hear internally, and then if we have the courage to listen to that, it can be an excellent guide for us.”

Personal Quote

“When it comes right down to it, the Beatles were right: All you need is love. I take no interest in material things anymore. I enjoy an engaging conversation, delicious food and wine. Only quality time, with quality people. I would rather have four quarters than a hundred pennies!”

— Breastcancer.org community member

 

Managing relationships with family and friends at the end of life

As you face the end of your life, your family and friends also face the reality of a life without you — a situation that can be difficult to navigate. Some people may feel the impulse to comfort and protect their loved ones. But try to remember that it’s not your responsibility to make this easier on them. “If there’s any time in your life when you have the right to be selfish, this is it,” says Grosklags.

Of course, if examining your relationships brings you peace, then it makes sense to do so. “I do an exercise with people where I will ask them, ‘Is there anything you haven’t said to somebody that you need to say, whether it’s thank you, I love you, I forgive you, I’m sorry?’ And those are things that I talk with people about at the end because I want them to be in the best psychological place and emotional place that they can be,” Grosklags adds.

Some other things to keep in mind:

  • Whom to tell about the prognosis is your decision. You should probably tell your closest family and friends when treatments have stopped working and you’ve accepted that your life is coming to an end. Beyond that, it’s up to you if you wish to let anyone else know. You also can assign a family member or friend to let others know at a time that feels right to you.

  • With the people you’ve decided to tell, be open about the prognosis and what you want to do with your time. The people closest to you may be involved in your plans, whether that means traveling, visiting them, planning special outings, or just being together. Tell them what your hopes are for how you wish to spend your time and how they can help.

  • Ask for what you want from relatives and friends, and tell them to do the same with you. Direct and open communication is important now. There may be times when you want loved ones close by and other times when you want to be alone. Loved ones need to know when it’s okay to visit or call. And they need to tell you if there’s a day when they’re just not up for calling you or coming to see you. They might need time to grieve in private so as not to overwhelm you with their feelings. It’s natural for there to be difficult emotions on both sides, and everyone needs a break now and then.

  • Be prepared for some relatives or friends to say the wrong things or distance themselves. Some people just aren’t good at handling bad news about a loved one. Even the people you care about most might say the wrong things. Some examples: “You don’t look that sick!” “What does your doctor think is to blame for the stage IV cancer?” “Could it have been prevented?” “Is there anything you could have done differently?” “Just fight hard; you can beat it!” Some might put you at a distance or drop out of your life completely — perhaps because they feel awkward and don’t know what to say, or because it’s just too painful for them. And that can be painful for you. If this happens, move your attention to the people who do understand and can be there for you. Some people find that friends and colleagues step up in unexpected ways, even if they weren’t that close to them before. Some people just get it.

  • If you decide to stop treating the cancer, some relatives and friends might not be able to accept your decision. Our culture has created this myth that if you just fight long and hard enough, you can overcome cancer. Your loved ones might insist you keep fighting or blame you for giving up too soon. They might go into denial about how the disease is behaving and refuse to accept it. No person living with cancer makes the decision to stop treatment lightly, and it often comes after many rounds of many different therapies. You can explain what you stand to gain from stopping treatment but, ultimately, others have to come to terms with your decision on their own. If you can arrange it, it might be helpful to have a member of your medical team speak with them directly to help them understand your situation.

  • Repair estranged or distant relationships if this is a priority for you and it doesn’t add to your stress. Some people feel a desire to repair relationships that may have grown distant or strained over time, whether because of past disagreements or differences, geography, or just the busyness of life. If this is true for you, you may want to seek the help of a counselor, social worker, clergy member, or other trusted adviser for ideas on how to best broach the subject when you contact them. Grosklags also recommends the book The Four Things That Matter Most by palliative care specialist Ira Byock, MD. The book provides guidance for healing relationships. If estranged relatives or friends get in touch with you when they learn the news and you’re not sure what to do, it is your choice whether or not to put energy into repairing the relationship. You have the right to decide which people you want in your life at this critical time.

  • Choose two people you trust to handle legal documents and other directives. Put people in charge of knowing where your important documents are, such as your will, living will, and advance directive. It’s a good idea to revisit these documents with your loved ones to make sure they understand your wishes, since some of the legal language can be confusing. If you created letters, videos, or other keepsakes for loved ones to receive on future special occasions, you need someone to carry out your plans. If you have children and you want certain family members or friends to serve as their mentors or role models, make sure you let your loved ones know.

  • If your family needs professional help, ask for it. If open conversations and communication aren’t your family’s strong point, you’re not alone. Many cancer centers have family counselors, therapists, or social workers who can help. They’re used to helping families work through the challenges that a terminal diagnosis brings.

Several members of Breastcancer.org’s discussion forum for people with stage IV breast cancer have recommended the book The Five Invitations: Discovering What Death
Can Teach Us About Living Fully
, by Frank Ostaseski, as a tool for starting conversations with loved ones.

 
Sometimes people feel guilt when they’ve reached acceptance with the end of life. It’s like, ‘Everyone else around me is falling apart and they’re sobbing, and I’m sitting here feeling relief and content inside.’ It’s not unusual to want to take on your loved ones’ feelings, but you have to be very careful with that, because when you’re going through cancer and are exhausted, you don’t have the capacity to take on everyone’s stuff.
Kelly Grosklags

— Kelly Grosklags, LICSW, BCD

 

Talking with children at the end of life

If you have children in your life, you face the added challenge of figuring out how and when to tell them that you’re not going to recover. If you’ve stopped anti-cancer treatments such as chemotherapy, there may be a period when you start to look and feel better. A child may easily conclude that because you look better, you must be getting better. It’s important to take advantage of this time to enjoy your children or grandchildren and make more lasting memories for and with them. At some point, though, it’s important to let them know that you are leaving them.

There is an understandable impulse to protect children from bad news. But trying to shield them from the reality of the situation only make things more difficult. The worst way for children to learn bad news is to overhear it or to sense that something is wrong but never be told the truth. Try to start the conversation early enough so you can talk about it over time and they can process the information and ask questions. Keep in mind that it doesn’t need to be a single conversation. You can introduce the topic gradually, perhaps first letting them know that the treatments aren’t working the way your doctors hoped they would. You can explain that you’re not going to get better, but that the time you have together now is what matters. The details you cover in your conversations depends on the child’s age and whether it’s your own child, a grandchild, or a niece or nephew. No matter how old the child is, being honest at a level they can understand is key.

Some other advice you may find helpful:

  • Consider introducing age-appropriate books about dying. With younger children especially, simple stories can help them understand what is going to happen. Ask a children’s or school librarian for suggestions.

  • Tell your children how they can expect to be cared for after you’re gone. Tell them exactly what the plan is for their futures. If you’re partnered, tell them who plans to help your partner care for them. If you’re a single parent, tell them who plans to take care of them and where they can expect to live. If there are other adults you’ve asked to be a presence in their lives, tell your children who they are.

  • Keep routines as normal as possible. Encourage your children to stick to their routines — school, play, and hanging out with friends — and tell them they can continue those routines after you’re gone. Make sure they know you want them to continue their daily schedules.

  • Spend time reminiscing. Look through old photos and relive the memories you’ve built as a family. Make sure your kids know where to find those photos in the future, too, whether they’re in books or on your phone, tablet, or computer. Make them a photo book if you have the time, or present them with a treasured photo (or photos) of the two of you.

  • Spend time with each child separately. This can be a challenge, but it doesn’t have to be a huge time commitment. Watch a movie or favorite TV show together. Draw or color or paint. Sit and have a snack. Just talk. Go out for lunch or a treat. When you have the energy, use the time to focus on them.

  • Help children find an outlet for their emotions. There are many options available for children in families facing the loss of a parent: support groups, summer camps, special programs just for children and teens in the same situation. Hospitals often have professional therapists, social workers, and counselors who can help when children lose a parent, grandparent, or other close relative. If there is someone outside the home your child trusts, such as a school counselor, coach, or teacher, ask that person to play the role of sounding board. Children need an outlet for their feelings.

  • Let their schools and other activity leaders (coaches, instructors) know what’s going on. Your child may act out in unexpected ways or their typical behavior may change — they may seem angry, sad, or withdrawn. The adults in their lives should know what is going on at home. Certainly, these adults don’t have to mention your diagnosis to your child; in fact, some kids like having spaces in their lives that are free of talk about cancer. Over time, though, some of these adults could become a key source of support.

  • If your child is old enough and seems interested, bring them to a doctor’s appointment with you. Some children may find it reassuring to meet with their parent’s medical team. It could take some of the mystery out of what’s happening and help them see that you are in good hands. They also may find it helpful to be able to ask the doctor some questions themselves.

  • Consider writing letters or making audio or video recordings that make you an ongoing presence in your children’s lives. Some people time them for special occasions in the future, such as graduations, birthdays, weddings, or other milestones. Others create albums or keepsake books or video diaries. Entrust a loved one with giving these items to your children over time.

  • If your children are old enough, let them choose how much (or how little) they want to be there at the very end. There comes a time when the end of life is near. If you’re at home, your children may be there, too. If you’re in a hospice care setting, they likely come to visit you, as they would if you were in the hospital. You and your partner or other relatives can work together to figure out what your children can handle. If your child wants to be with you during this time, that’s fine. If it’s too upsetting and they pull away, that’s fine, too. In either case, they should stick to their daily routines as much as possible. Say your goodbyes at the time you think works best for them.

  • With young children, avoid comparing dying to sleep. Dying is final; sleep is not. They need to know that you’re not coming back. They also might become fearful of sleep if they associate it with dying.

For more information and resources, you can visit the Parenting at a Challenging Time (PACT) Program at the Massachusetts General Hospital Cancer Center.

 

Planning what you want for the dying process

When you’re in treatment, there is a plan for different therapies to try and ways to relieve side effects. As Grosklags likes to say, “There is always a plan!” If you stop anti-cancer treatments, there is still a plan for controlling symptoms such as pain and fatigue through hospice care. As difficult as it may be, it’s important to make a plan for how you wish to die.

Thinking about the dying process is the scariest part for most people because the experience is a complete unknown. But in the United States especially, the medical system is oriented toward keeping people alive, even if that means intensive care and assistive machines such as ventilators and feeding tubes. Unless you clearly say no to that in advance and let your family know your wishes, it’s possible you could experience interventions you do not want. To capture how you want things done in writing, advance directives and living wills are a start, but often they use a lot of technical language that isn’t easily interpreted or understood. In addition to reviewing these documents and telling your loved ones where they are, it’s a good idea to share your wishes with them in plain language.

Grosklags recommends a living will template called Five Wishes. You can use the template for a small fee ($5) and you can use it to simply and clearly define your wishes about:

  • the person you want to make medical decisions for you when you can’t

  • the kind of medical treatment you do or don’t want

  • how comfortable you want to be

  • how you want people to treat you

  • what you want your loved ones to know

Whether you use this template or something else, make a plan in writing, share it with loved ones, and make it easy to understand. Try to do this early enough so you have the energy to work through it.

Where and how do I want to die?

Where: Do you want to be at home, in a loved one’s home, or in a hospice setting? You can have a hospice care provider come into your home if you wish. However, if being at home would be too hard on your family, or if you live alone, hospice provides a homelike setting that may be better for you.

How: Do you want to be kept completely comfortable, even if it means being sedated and somewhat out of it? Or do you prefer that medications be dosed so you have pain and symptom control, but you’re also more alert and present with family and friends? Your answers to these questions can change over time.

Also, think about what you want your day-to-day life to be like. Do you want lots of family and friends around, or do you prefer your environment to be quieter and more serene? Would you rather be alone or mostly alone? Grosklags notes that her own patients typically choose to die similarly to how they lived. People who love parties and lots of company often want the same as they die. People tend to surround themselves with the things they love: pets, music, art, movies, treasured photos. Whatever gives meaning to your life can also bring meaning and comfort as you die.

“I worked with a woman who always wanted her family to have a cocktail, and she called it the happy hour of dying,” Grosklags says. “And it was just this beautiful ritual that the family did for two weeks straight in her honor. Well, she was a woman that always hosted the parties, always encouraged people to have a good time, and she told me to her that was a good death. That if the people in her life were happy, that of course made her happy.

“When I see people dying, I see them wanting and craving things and hoping for things in their death that they also had in their life. They may be somebody who absolutely loved animals and were very, very close to their pets. A good death to them would be that their animal would be with them or at least be available to them in the end. If they are somebody that really enjoyed a lot of family around, liked to party, liked it loud, they are likely going to be that person who wants a lot of people around, doesn’t care if there’s a lot of people in the room, always wants somebody in the house, wants people to kind of keep going on, have conversation, have dinners.”

How do we know when I am in the final stages of life?

Some symptoms are fairly common in the final two to three months of life. Pain often increases and requires higher doses of medication. Fatigue gets worse, appetite starts to disappear, and breathing may become more difficult. Palliative care or hospice care providers help you with these symptoms. If you’re at home, make sure there is a plan for whoever tends to your needs when these providers aren’t there. Home health nurses also can be a key resource at this time. It’s not unusual to be hospitalized if you need interventions that help with complications such as bone fractures and breathing problems. You, your family, and medical team should talk about when it’s appropriate to call the doctor or nurse for help or advice. (Calling 911 generally isn’t recommended because emergency medical services personnel won’t know the details of your situation or your preferences.)

If you’re scared, talk to the hospice team about what you can expect. They are experts at not only controlling physical symptoms such as pain, but also helping with any mental anguish or suffering that you and your family members may experience. Anyone who plans to be with you to the very end also can prepare for it. “It’s often harder on loved ones than on the person who is dying,” says Grosklags. “You can simply say to them: ‘It would be helpful to me if you educated yourself on what this is going to look like.’”

Two resources you can recommend to them are Final Gifts: Understanding the Special Awareness, Needs & Communications of the Dying (Simon and Schuster, 2012) by hospice nurses Maggie Callanan and Patricia Kelley and the pamphlet Gone From My Sight by hospice nurse Barbara Karnes — often called the little blue book since its publication in 1985. Karnes also created a DVD titled New Rules for End of Life Care that can be very helpful. There are many other resources available through Karnes' website.

Your family members and friends may likely feel like it’s their responsibility to get you to eat or drink. They should know that refusing food and drink at the end of life is normal as the body shuts down. Confusion and sleepiness are common as well. People sometimes say things that don’t make sense or seem incoherent. They might seem upset or agitated. At the very end, saliva and mucus can build up in the back of the throat, making breathing noisy. People sometimes have moments when they seem completely alert and lucid. These changes can be upsetting if your family and friends aren’t prepared for them. Once they have some information about what to expect, they can focus on just being there for you. And that’s what matters most.

"It’s a phrase that sometimes takes people back, a good death — wow, what?” says Grosklags. “Well, a good life should lead to a good death. Tell people what you want. Have these conversations often and early. You get one chance to do this, and if there’s ever a time in your life when you get to be completely focused on you and what you need, it would be at the end. You know, we all live until we die. And I think as simplistic as that might sound, it’s also profound.”

Expert Quote

“Dying is not a medical event. Dying is a social, communal event. And when we’re at the bedside of someone who is dying, it’s all about the community, the togetherness, not the medical stuff that’s going on. It is that communal companionship, that presence, that means more than anything else in the days, the hours, even the months before death.”

— Barbara Karnes, RN

There are practical aspects, such as legal and financial issues, you need to consider so your wishes are honored. It can help to tackle the practical issues associated with death before you become seriously ill and have difficulty doing things for yourself.

Knowing that your personal affairs are in order allows you to focus on keeping your health and emotional well-being the best it can be.

Information on your finances, healthcare directives, email accounts, automatic bill paying, and other practical, daily matters might be in several different places. Putting all the information in one place can make it easier for others to help you if you need it. It can also help you make sure that everything is done exactly as you would like.

Power of attorney

Granting someone power of attorney allows them to make decisions for you. Power of attorney is a relatively simple and inexpensive procedure. It’s possible to grant power of attorney for your financial affairs to one person and power of attorney for your medical decisions to another person. Of course, you can always have one person do both.

When you give someone power of attorney for your finances, you allow that person to manage your bank accounts, house, and any other assets you may have. If you have joint accounts with another person (your spouse, partner, or parent, for example), that person can probably manage your finances without power of attorney. Still, if you have any accounts that are only in your name, power of attorney may be necessary.

Giving someone power of attorney for your healthcare allows that person to make choices for your care. Talk to this person and other loved ones about the type of medical treatment you want and don’t want if you’re unable to make decisions for yourself.

Think about who you might want to make decisions for you if you can’t make them. If you decide you want to grant someone power of attorney for finance and healthcare, talk to an attorney so the proper documents can be prepared. Granting or revoking power of attorney must comply with state laws to be valid, so you want to be sure everything is done properly.

Wills and living wills (advance directives)

A will is a legal document that explains what you’d like done with your belongings after you die. Although thinking about your will can be upsetting and stressful, it’s important to have one if you want to control what happens to your money and property after your death. If you don’t have a will, your property gets distributed according to the probate laws of your state. Probate is the legal process of distributing the property owned by someone who has died to heirs after the death.

You can write up your own, but a will is more likely to hold up to any legal challenges if it is prepared by an attorney. A will must be signed by adult witnesses who don’t gain by your death and are not named as a beneficiary, an executor, or a trustee in your will. You have to sign and date your will in the presence of the witnesses.

Many attorneys recommend including information on your internet accounts in your will. If you receive any account statements through email, your family and loved ones may not know about them unless they can access your email account. For each email account, list the service provider, log-in name, and password.

After you’ve written your will, keep a copy for yourself and give a copy to your attorney to keep. Make sure to review your will about every two years or so to make sure it still reflects your situation and intentions. If you want to change your will, have your attorney make the changes so they are done in accordance with your state’s laws. You can also write a completely new will if you’d like.

A will is just one way people can distribute their assets after they die. Establishing a trust is another option. A trust is an agreement under which money or other assets are held and managed by one person for the benefit of another. Some of the benefits of a trust include the ability to create financial safeguards for family members and postponing taxes. Still, there are several types of trusts and creating them can be fairly complex. Trusts must follow your state’s laws and may affect your tax situation. If you think you might like to create a trust, talk to an attorney about the pros and cons. It’s also a good idea to have an attorney help you draw up your trust to make sure it does what you’d like it to do.

A living will outlines for your loved ones and your medical team the kind of care you want and don’t want. A living will may also be called an advance directive and ensures your wishes are followed even if you can no longer make decisions.

A living will usually covers things such as artificial feeding, using a respirator, organ donation, and whether or not you want cardiopulmonary resuscitation (CPR) if your heart stops. The National Hospice and Palliative Care Organization has living will forms available by state. Living will forms usually don’t have a space to name someone who is responsible for making your medical decisions if you can’t make them. This is what giving someone power of attorney for your healthcare does.

You can change your living will at any time same as you can a will. It’s a good idea to review it every so often to make sure it still reflects your wishes. If you decide to change your living will, the changes must be made, signed, and notarized according to the laws of your state. Make sure you tell your doctors and family members that you have changed your living will.

It’s a good idea to talk to your family members and other loved ones about both your will and your living will. The discussion may be hard, but it can help your family members understand your wishes and make sure they’re carried out.

Ensuring care for children

If you have children, this may be the most upsetting legal arrangement you have to make. As a parent, you don’t want to envision a time when you can’t care for your children. Still, it’s important to make sure to outline your wishes clearly. If you don’t make plans for the care of your children, the state in which you live likely makes these decisions.

If you are part of a two-parent household, the surviving parent likely becomes your children’s guardian. If you are a single parent and the other parent is not involved in your children’s life for any reason, you should probably name a legal guardian.

A legal guardian is a person who has the legal authority to care for the personal and property interests of another person. In the case of children (usually those younger than 18), the legal guardian is responsible for the child’s physical care, education, health, and welfare, and makes decisions about any faith-based issues.

Think about who you would like to care for your children and talk to that person. You need to make sure the person you’re considering wants the long-term responsibility of being a guardian. If you have more than one child, you need to make sure the person you’re considering is agreeable. You also need to make sure you name the same guardian for all your children.

If your child has another parent, both of you must agree on who you choose to be guardian.

There are several categories of legal guardianship and the laws about guardianship are complex and vary widely from state to state. It’s a good idea to talk to an attorney about creating guardianship documents to ensure they comply with the laws of your state and carry out your wishes for your children’s care.

Funeral or memorial service preplanning

Arranging a funeral or memorial service can be daunting to someone who is grief-stricken. Loved ones have to make decisions in a short period of time. If you’ve left instructions, your loved ones can be reassured they are doing things as you wished.

Decide what you would like at your funeral or memorial service. Many people decide to preplan their funeral or memorial service to help their loved ones and leave written instructions for them. Keep in mind that the laws governing funerals and memorial services vary from state to state. Make sure that your wishes comply with the laws of your state. Some things you may want to consider:

  • Do you want a funeral or memorial service?

  • How many people would you like to include?

  • Do you want the service to be formal or informal?

  • Do you want the service to be faith-based?

  • What are your wishes for your physical remains?

You also may want to think about the cost of any service. Costs can vary widely and you don’t want your loved ones to be surprised by any unexpected expenses. Some people choose to prepay their own funeral and burial expenses to ensure that everything is done exactly as they prefer.

Once you have made your decisions, it’s a good idea to talk to your loved ones about your wishes. You also may want to choose a person who is close to you and who understands your wishes to oversee your service in case any questions have to be answered.

Life insurance

There are two types of life insurance:

  • whole life (also known as permanent, universal, and variable life)

  • term

Whole life insurance provides benefits after you pass away, as well as cash value. The cash value means that if you live, you get back some of the money you spent on the premiums. You can get the money by cashing in the policy or by borrowing against it. Whole life insurance lasts as long as you live.

Term life insurance provides death benefits only. If you live past the length of the policy, no benefits are given. Most companies offer term life insurance for terms of 1 to 30 years. In most states, the policy can be renewed up to age 80 or older (depending on the state in which you live), usually at a higher premium. Depending on the insurance company, your age, and the amount of the policy, you may have to submit urine or blood samples or have a physical before the policy is effective.

As you’d expect, whole life insurance policies are much more expensive than term life insurance policies.

If you have metastatic disease and do not already have life insurance, it may be difficult to obtain an individual policy. However, it may be possible to get onto a group plan through your employer if you are still working.

If you’d like to purchase a policy, it can be helpful to talk to a financial adviser or healthcare attorney. Everyone’s situation is unique and you need to figure out your needs and choose the type of policy that is best for you.

You may have life insurance through your employer. You also may have purchased your own life insurance policy. Some people have both of these. Make sure that you have a copy of the policy and that the beneficiary information is up to date.

Property: Deeds, titles, stocks, and securities

If you own a house, a car, a vacation home or cottage, stocks, bonds, or other property, it’s a good idea to have:

  • the property’s address (if it’s a house or a piece of land)

  • name, address, and phone number of the mortgage company (if applicable)

  • the deed for the building or piece of land

  • how the title is held

  • market value or last assessed value of the property

For each car, truck, boat, or other vehicle, it’s a good idea to have:

  • name, address, and phone number of the financial institution that holds the loan on the vehicle, as well as the account number

  • title (if the vehicle is owned outright)

  • description of the vehicle

  • copy of the bill of sale

  • market value

For each stock, bond, certificate of deposit, or other secured or unsecured note, it’s a good idea to have:

  • description of asset and name, address, and phone number of company or financial institute that offered the asset, as well as the account number

  • stock certificate

  • how the title is held

  • market value

  • the broker’s name, address, and phone number (if applicable)

Bank accounts, retirement accounts, and credit card accounts

You may have bank accounts at several different institutions. You also may have several different retirement accounts, especially if you have changed jobs a number of times over the years. You also may have several credit cards. Make sure that the beneficiary information on your retirement accounts is accurate and up to date.

For each account, make sure you have:

  • name, address, and phone number of the financial institution

  • the account number

  • the current balance

  • the date payments are due (for credit cards)

  • the beneficiary (for retirement accounts)

Most of this information can be found on your monthly statement of account.

Business information

If you own one or more businesses, you probably have detailed files. Make sure your family and partners (if you have them) know where these files are, as well as the name, address, and phone number of your attorney and your accountant.

Online accounts and online bill paying

Today, many people pay their bills online. The amount of the bill is automatically deducted from their bank accounts, and they receive a statement through email confirming the payment was received and its amount. Paying bills this way is easy and convenient. But if someone else is managing your accounts for you and doesn’t have access to your email, there is no paperwork about the accounts for them to review.

If you pay bills online, it’s a good idea to print out the latest email message from each account. That way, whoever is overseeing your accounts can make sure enough money is available to pay them.

Many attorneys recommend making a list of all your email accounts, including service provider, log-in name, and password, just in case your family needs to access the accounts.

Ways to maintain your financial and legal information

Once you’ve collected all your financial and legal information, you can put it in a format that works best for you and your loved ones:

  • File folders are an easy way to start. Many office supply stores sell boxes with hanging folders inside. As you gather your information, you can use different colored folders for bank accounts, property, and insurance.

  • Three-ring binders allow you to create a separate binder for each topic.

No matter how you store your financial and legal information, the important thing is to make sure it’s up to date and accurate.

 

Palliative care for metastatic breast cancer

Palliative care describes treatments that reduce pain and other symptoms but don’t fight the disease. Palliative care works to help a person feel as comfortable as possible. You can receive these treatments at home or in the hospital. Palliative care can be used at any time during any phase of cancer treatment — early-stage, recurrent or locally advanced-stage, or metastatic. The goal is to reduce pain and discomfort and increase quality of life.

Below are some of the most common symptoms and side effects that people might experience because of metastatic breast cancer and its treatment. You may have one or more of these symptoms and side effects or you may have none:

 

Hospice care

You may feel good for an extended period of time if you decide to stop treating the cancer. But eventually you may need help controlling pain or other symptoms and staying strong. Hospice care offers physical, emotional, and spiritual support at a center or in your own home. Hospice care is covered by most health insurance companies during the last six months of life. If a person lives longer than six months in hospice, insurance usually covers an extension.

Hospice tries to improve the end of life by providing:

  • pain relief and other medical supportive care

  • psychological and spiritual support for you and your family

  • help with daily tasks such as bathing and dressing

When you’re in hospice care, nurses and home health aides visit you as often as needed. They become your main source of direct medical care. Your doctor usually still oversees your care and provides advice and prescriptions as needed.

Hospice helps many families move through several stages — from urgently searching for answers, to medical care, to the acceptance of what has been and what is coming. It can help you and your family find peace and comfort, not only with death but also with life as you have lived it.

Your insurance company can give you names of hospice services covered by your plan. You also can ask your medical team for recommendations. The Hospice Foundation of America[VL48] or the National Hospice and Palliative Care Organization can provide more information on hospice care and help you find the name of a hospice provider in your area.

Questions to ask when choosing a hospice:

  • How long has the hospice been in operation?

  • Can we speak to one or more families who have used this hospice service?

  • What types of insurance does the hospice accept?

  • What, if any, out-of-pocket charges can we expect?

  • How often do hospice staff members, including doctors, nurses, social workers, clergy members, and home health aides make home visits?

  • Does the hospice have an inpatient facility?

Personal Quote

“As I made the transition from fighting the cancer to treating the pain and problems from the cancer, I have felt better than I have in years. I am truly at peace with my decision. I know it was the right decision.”

— Amber

 

End-of-life blog series

Thinking about the end of life can be one of the hardest things anyone can do. But for many people, it can take some pressure off to start thinking about what they want now so that they can focus on what matters the most later.

In this blog series, experts provide guidance on the complex questions that come up when we’re thinking about the end of life:

— Last updated on February 9, 2022, 11:20 PM