Seniors With Terminal Illness: Crucial Info for Patients and Loved Ones About Dealing With End-Stage Medical Conditions
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Having a terminal illness is definitely life-altering. Whether you're a terminally ill senior or a close friend or family member of one, the impact is significant. It's normal to experience a huge range of emotions and have trouble knowing what to do. After all, dealing with a terminal illness often means coping with a lot of change and uncertainty. Yet, it's also possible to get through the experience with some dignity and greater peace of mind.
Reliable information and good communication are essential. Seniors with terminal cancer, Alzheimer's disease, advanced heart and lung conditions, or other terminal diseases often need the support and broader perspective fostered through open dialogue with their doctors, caregivers, and loved ones. Families of terminally ill seniors also benefit from having honest conversations and learning more about their loved ones' conditions.
That's why this article covers a variety of topics to help you and your loved ones navigate the challenges and make the best of your remaining time. You'll learn more about what to expect, what to ask, and what to consider when making hard decisions (such as whether to fight for as much time as possible or place a higher priority on quality of life).
This information is not a substitute for professional advice from qualified medical, legal, financial, and social services experts who understand your particular situation.
What Is a Terminal Illness?
Persistent, irreversible medical conditions come in two varieties: chronic and terminal. The main difference is that a chronic illness, in and of itself, isn't considered to be fatal. With treatment, many people who have chronic diseases live their full lives. In contrast, terminal conditions directly cut many people's lives short.
So, what is terminal disease? Here's a common terminal illness definition: a progressive, incurable medical condition that typically leads to death within a relatively short amount of time. Depending on the particular factors involved, terminal illnesses (also called end-stage or life-limiting diseases) can bring about the end of patients' lives days, weeks, months, or, in some cases, years after diagnosis.
Some of the most common terminal illnesses are:
- Late-stage cancers
- Advanced heart and circulatory conditions
- Advanced respiratory diseases
- Irreversible damage from stroke
- Advanced kidney disease
- Advanced liver disease
Additional medical conditions that merit inclusion on a terminal illness list are amyotrophic lateral sclerosis (also known as ALS or Lou Gehrig's disease), certain other neurodegenerative disorders, and some kinds of drug-resistant bacterial infections. Some viruses, such as Ebola, can also cause terminal illness.
Complications That Become Terminal
Having a combination of multiple medical conditions and/or complications that will likely lead to death in a short amount of time also qualifies as "terminally ill." In fact, someone with a progressive chronic illness may eventually experience complications that endanger his or her life. So even though a chronic illness itself is not a terminal disease, complications arising from it (such as infections) may lead to a terminal condition.
That's why Alzheimer's is a terminal illness, but Parkinson's disease is not. Alzheimer's always leads to death as a result of the disease itself, often at an earlier age than would otherwise be expected. In contrast, Parkinson's progresses in a way that, slowly, over time, reduces a person's movements until he or she can eventually no longer stand or walk. With late-stage Parkinson's, a patient becomes more vulnerable to potentially fatal complications like infection, blood clots, and falls. But Parkinson's is considered a chronic illness because the disease itself doesn't directly lead to death, and advances in treatment have greatly extended patients' life expectancies.
Similarly, Crohn's disease is not terminal, but some people eventually develop life-threatening complications from it. Diabetes is not a terminal illness, but it can cause fatal secondary conditions if it isn't managed well. And multiple sclerosis (MS) is not a terminal illness, but some patients at the advanced stage of the disease can pass away from infections or other complications.
What It All Means
Basically, a terminal medical condition is a single illness or combination of medical problems that will directly lead to death in a relatively short period of time. There are no cures for conditions like dementia or terminal cancer, meaning that people who are diagnosed with them will generally pass away a lot sooner than they would if they were healthy.
Of course, not all cancers are fatal. Many early-stage cancers can be successfully treated and put into remission. But many stage 4 (IV) cancers are terminal because they have metastasized (i.e., spread) to other regions of the body, making treatment much more difficult, ineffective, or even impossible. Any type of cancer can progress to a late stage and become fatal.
By the same token, heart disease is fatal for many older adults when it advances to a point at which effective treatment options no longer exist. That's also true for a lot of patients with other advanced organ diseases. For them, being terminally ill means not having options like organ transplants or other potentially life-saving treatments or procedures.
How Long Can a Terminally Ill Senior Live?
This can be hard to predict—even for doctors. It depends on all kinds of different factors, including the person's age, his or her particular diagnosis and treatments, the stage of the illness, and his or her other physical and/or mental conditions. In the elderly, terminal illness often leads to death in six months or less. In younger seniors, terminal diseases sometimes last longer than expected—sometimes for years. But no two terminally ill patients are exactly the same. Survival times vary for everyone.
The Trouble With Predictions
Physicians often make inaccurate predictions about their patients' survival time. In fact, numerous studies have shown that physicians tend to be too optimistic when estimating how long their terminally ill patients have to live. They frequently overestimate, which can make their prognoses unreliable.
On the other hand, some doctors are accurate in their estimates, and some are even too pessimistic. So any prognosis you receive is only an educated guess, not a precise determination of your actual longevity. Doctors try to know how much time you have to live by:
- Looking at the median survival time of people your age, with your illness
- Judging the progression and stage of your illness
- Evaluating the potential impacts of other conditions you may have
- Weighing your family history
- Determining whether you can handle proposed treatments
- Analyzing whether treatments may extend your survival time
- Using intuition based on clinical experiences with similar patients
A study in the Journal of Palliative Medicine found that about 13.4 percent of terminally ill patients survive more than six months after beginning hospice care. But, like physicians, hospice teams are often inaccurate at predicting death within a specified period of time, especially when it comes to stroke and dementia patients.
According to the National Hospice and Palliative Care Organization, the median length of hospice care in the U.S. is 18 days. That means half of all hospice patients survive longer than that and half survive for less time. The median length of hospice care also varies by the type of terminal illness, as highlighted in the following examples:
- Kidney disease: 8 days
- Cancer: 18 days
- Respiratory illness: 21 days
- Stroke: 26 days
- Heart or circulatory disease: 31 days
- Alzheimer's, Dementia, and Parkinson's: 55 days
It's true that many terminally ill patients are able to live for a while before requiring hospice or end-of-life care. With some illnesses, it can take several months or even years to reach that point. But regardless of how long it lasts, you cannot survive a terminal illness if it was accurately diagnosed.
By definition, terminal cancer is incurable (as are other terminal medical conditions). Depending on the particular circumstances, a person can survive stage 4 cancer for five years or longer. However, you cannot recover from terminal cancer if it is truly incurable and/or untreatable.
After age 65, the life expectancy of a person with stage 4 cancer is often two years or less at the time of diagnosis, according to survival statistics from the National Cancer Institute. In fact, only 43.8 percent of all American seniors with late-stage cancer would be expected to survive at least one year. And only about 20 percent would be expected to live at least five years. However, those numbers are for all cancers in general. Certain cancers come with significantly better or worse expectations.
For example, data from the National Cancer Institute shows that the one-year survival rate for seniors with metastatic lung cancer is 24.6 percent. And only about 4.3 percent would be expected to live five years. For late-stage pancreatic cancer (one of the deadliest types), the numbers are even worse: Only 13.6 percent of seniors would be expected to live one year, and only 1.8 percent would be expected to live five years.
So-called "medical miracles" have certainly been reported. These are cases in which patients diagnosed with terminal illnesses seem to have recovered without any logical explanation. But those types of cases are rare; they are extreme outliers. And many of them may just be the result of mistaken diagnoses, meaning that the physicians involved were wrong in their assessments. (Their patients may not have been terminally ill to begin with.)
What Are the Main Stages of Terminal Illness?
Most terminal diseases are experienced as a progression of various emotions and physical changes. But terminal illness stages can look very different from one patient to another. Each disease progresses in its own way, and not all patients experience exactly the same symptoms and changes.
For example, certain terminal illnesses are painful for some patients but not for others. And each terminal patient experiences a unique range and intensity of emotions, which can change quickly and fluctuate over time.
Mental and Emotional Stages
People respond in different ways after learning they are terminally ill. But nearly every feeling is normal. So there isn't one universal set of mental and emotional phases; they can come and go without any apparent rhyme or reason. However, most terminally ill patients do experience at least some of the following mental or emotional states, though not necessarily in this order:
Combined with a terminally ill senior's spiritual convictions, intense emotions can sometimes play a role in bringing about dreams or visions that seem to have deep meaning. Often, such experiences are comforting. But having confusing or upsetting dreams or visions is sometimes a side effect of medication or a sign of a new, underlying medical complication that needs attention.
The physical experiences of terminally ill patients vary widely. Each circumstance is different. Some people have a relatively smooth transition to the end of life; others have challenging complications. But with proper care, most challenges can be managed in a way that greatly improves a patient's level of comfort.
Still, it's helpful to know what you might experience. That way, you aren't caught off guard by physical changes that you weren't expecting.
For example, terminal cancer symptoms are often wide-ranging, but many patients experience worsening pain and fatigue as their conditions progress. They also may experience fatal complications. That's because cancer can cause death in a variety of ways. Depending on where it has spread in your body, terminal cancer kills you by triggering irreversible complications like:
- Brain impairment
- Severe dehydration
- Uncontrolled bleeding
- Severe malnutrition
- Organ failure (such as of the heart, lungs, or liver)
- Blood clots that cause stroke or obstruction of an artery
Other terminal diseases can cause the same or similar complications, especially as patients get closer to passing away. But most of the physical changes caused by terminal conditions aren't directly fatal; they may just be indications that the body is compensating as best as it can. For example, in the final months, weeks, or days of life, a terminally ill senior might experience or display symptoms such as:
- Dry mouth
- Loss of bladder control
- Difficulty swallowing
- Weight loss
- Swelling and puffiness
- Noisy breathing
- Shortness of breath
- Loss of appetite
- Feeling too hot or cold
Pain isn't experienced by all terminally ill patients. But it can come about in a lot of different ways. For instance, it may come on suddenly and dissipate in a matter of weeks, days, or hours. Or it may come on gradually or intermittently and last for the length of a patient's remaining life.
Pain can be caused by inflammation or damage to nerves, bones, or organs. It can also "break through" when a patient is on painkillers. And pain can be felt in one area of the body even though the root cause is in a different area. But regardless of a person's condition, pain and other symptoms can often be managed through proper treatment and care.
When it comes to a terminally ill senior's last hours or minutes of life, loved ones and caregivers may notice changes such as:
- Cold hands and feet
- Blotchy or pale-blue skin
- Loud, "rattly" breathing
- Slow, shallow, inconsistent breathing
- Delirium or out-of-character behavior
What Should I Do After Being Diagnosed With a Terminal Illness?
It's normal to wonder how to move forward when presented with the unpleasant revelation of your terminal condition. You might feel stuck in time, unsure of the actions to take next. But take heart; you can reclaim a sense of control. Your goal should be to eliminate as much uncertainty as possible while drawing upon the strength of others. That way, you can make room for greater comfort and peace of mind for you and your loved ones. Here's how to achieve that:
1. Get a second opinion.
Doctors and other medical professionals aren't perfect. Sometimes they get things wrong. And this is your life we're talking about. So you shouldn't have to wonder about your diagnosis.
By getting a second opinion from a doctor at a different institution, you'll either get your diagnosis confirmed or learn that your medical condition might be something else. If your terminal illness is confirmed, you'll know for sure—eliminating some of your doubts. And if the second opinion includes roughly the same prognosis, you'll probably have a better idea of how much time you have left.
2. Ask for honesty.
The truth isn't always easy to hear. Even so, the vast majority of patients with advanced cancer want accurate and honest communication about their prognosis, according to an article in the Annals of Palliative Medicine. (The same is probably true of other terminally ill patients.)
Yet, according to a study in the Journal of Clinical Oncology, very few patients fully understand their prognosis unless it is discussed with the appropriate physicians on an ongoing basis. In part, that's because many doctors lean too heavily in the direction of optimism (at least initially), sometimes sugarcoating what a prognosis actually means. They're afraid to crush their patients' hopes.
When discussing terminal diagnoses, doctors do tell patients they are dying. But they don't always say it so bluntly or directly. For instance, instead of telling a patient that he or she will likely pass away in under a year, a doctor might say that the illness probably isn't curable. Unfortunately, that can provide a patient with just enough hope to move him or her in a direction that is more destructive than beneficial.
For example, without a candid prognosis, a patient may decide to pursue costly or risky treatments that aren't supported with scientific evidence or that greatly reduce his or her remaining quality of life. Or a patient might not take the time to consider or plan for the kind of end-of-life care that he or she would really want—and deserve.
According to the Stanford ML Group, about 80 percent of Americans want to live their last days at home, yet as many as 60 percent of all deaths occur in acute-care hospitals. And most of those hospital patients receive aggressive treatments in their last days. Such treatments often do little to extend patients' lives by any significant margin. Instead, they frequently prolong the suffering in an environment that is anything but peaceful.
So as a terminally ill patient, it may be in your best interests to insist on honesty from your physicians. Get them to tell it to you straight, no matter how difficult the news will be to hear. Ask about the full range of potential outcomes. Or at least specify how much knowledge you want your doctors to share with you.
That way, you'll be more grounded when considering your next steps. And you'll likely have more of an opportunity to make arrangements, such as for palliative care, that can maximize your quality of life going forward.
(Many terminally ill patients and families that are driven by unjustified hope and the potential of alternative, experimental, or aggressive treatments try to schedule palliative care when it's too late. That can result in medical crises, distressing visits to the hospital, and unpeaceful death.)
3. Discuss your care and treatment options.
After the initial shock of your diagnosis wears off, schedule appointments with your doctors in order to have conversations about the courses of action that are available and realistic for you. Depending on your condition, you may have the option of pursuing treatments to extend your life or shifting your focus entirely to the management of your symptoms. (You also may have the option of pursuing both symptom management and ongoing treatment concurrently.)
But in order to make that kind of decision, you should learn all you can about what to expect from your particular illness as it progresses. Your doctors can talk to you about subjects like:
4. Figure out what matters most to you going forward.
Some people are fighters all the way to the end, doing anything possible to extend their lives. Others seek to maximize the quality of their remaining time, even if it means they might die a little sooner. And a lot of people choose a path somewhere in the middle—pursuing reasonable treatments up until a certain point, then shifting their focus toward having a "good death."
Remember: You probably can't predict how much time you really have left. And not all "life-extending" treatments work. Sometimes, they do the opposite of what they're meant to do and make patients feel worse on a day-to-day basis. On the other hand, some terminally ill seniors live much longer than anyone expects without pursuing any extra treatments. A focus on quality of life can sometimes have positive, life-extending impacts on people's minds and bodies.
So, after talking about the various options with your doctors, it's really important to prioritize what you want. How do the potential benefits and downsides of each possible course of action align with what you envision for your remaining time? Will they aid or obstruct your deepest wishes? Your priorities may differ from other terminally ill adults you've known. And that's OK. For example, different patients have top priorities as diverse as:
- Proving that they're fighters
- Staying alive long enough for particular events or milestones
- Nurturing their relationships
- Being mentally present for and with the people they love
- Resolving conflicts
- Having fun
- Finishing major creative projects
- Traveling to places they've always wanted to see
- Crossing off items on their bucket lists
- Achieving other long-held goals
- Enjoying an ordinary day-to-day routine
- Helping others do what they love
- Living as comfortably and privately as possible
Many terminally ill seniors find that it helps to talk about all of this with a mental health professional. A licensed counselor or therapist can help you sort out your feelings and imagine a path forward.
5. Make a care plan.
With your top priorities figured out, you can start supporting them. Whether that means getting treatment, scheduling palliative care, or doing a combination of both, taking action to cope with your terminal illness will help ground you. Plus, the plans you make now don't have to be set in stone. As you move forward, you might change your mind or discover that you need types of support that you hadn't considered before.
When making your plan, think about where and how you want to be cared for, especially as your illness progresses and makes you less independent. Be realistic about your options, reflecting on your discussions with your doctors. And consider who you want to be around, what kind of spiritual support you'll need (if any), and who might be able to carry some of the burden on your behalf.
Also, remember that there may come a point at which you no longer have the physical and/or mental ability to inform people of your wishes or to handle your own affairs. That's why it's a good idea to explore giving someone you trust power of attorney (POA). It's also smart to prepare advance directives so that there are no questions about your wishes when it comes to end-of-life medical decisions.
Planning all of this stuff now will help you and your family; things will just feel a little easier for everyone. And if you have the financial resources to afford it, you can even hire a care manager to help arrange and coordinate all aspects of your care going forward. A care manager can act as your advocate, interacting with you, your loved ones, your doctors, and other people who are part of your support team.
6. Decide who to tell.
Mortality isn't an easy subject to discuss. In fact, according to a survey by The Conversation Project, even though more than 90 percent of people believe it's important to discuss end-of-life care with loved ones, only about a third of people actually ever have. But, of course, being diagnosed with a terminal illness kind of forces the issue.
So it's normal to feel apprehensive about sharing your news with others. But even though telling people that you're terminally ill can be hard, it can also provide some comfort. After all, it can relieve you of some of the mental burden you've been carrying around, and it can deepen your connections with the people who care about you.
Keep in mind that you don't necessarily have to tell everybody all at once. You may decide that, at least initially, you only want your closest friends and family members to know about your terminal illness. Over time, you can share the news with others, or you can ask one of your friends or loved ones to share the information with other people who may need or deserve to know.
How you tell people is up to you. Just remember that each person may respond to the news a little differently. So depending on the personalities involved, it might make sense to tell people about your illness either as a group or individually.
Share only the facts that you feel comfortable disclosing. But aim for honesty, and remember that it's OK to show your feelings. Don't worry if you're unable to answer all the questions you receive.
Some terminally ill seniors find it beneficial to have a counselor or care manager present when telling friends and loved ones about their conditions and the plans they've started making. It can also help to discuss your end-of-life options with people you love and trust before finalizing any plans. The Conversation Project offers a starter kit that provides a useful framework for preparing to have this kind of discussion.
7. Prepare advance directives.
Also known as a living will, an advance directive is a legal document that expresses what you want to happen in the event that end-of-life decisions need to be made when you're unable to speak for yourself. Combined with a durable power of attorney for medical care, advance directives help ensure that your wishes will be adhered to.
For example, you may or may not want to be resuscitated in the event that your heart stops beating or you stop breathing. You may or may not want to be hooked up to a ventilator or other forms of life support under various circumstances. Or you may or may not want a feeding tube or certain interventions for failing organs, such as dialysis for kidney failure.
Discuss various scenarios with your doctors (and loved ones if you want). Then, complete the appropriate advance directive forms for your state and make sure all the important people in your life know about them.
Alternatively, in some states, you have the option of completing much more comprehensive orders for your end-of-life care. Known as Physician Orders for Life-Sustaining Treatment (POLST) or by similar names, this option can offer clear guidance to doctors and family members when medical situations aren't as well defined, such as whether to hospitalize you or provide certain treatments in the event that you get a serious infection like pneumonia.
Having advance directives can make things easier for your loved ones, lessening the guilt they feel and minimizing conflicts with each other. It can also help maximize the quality of your end-of-life care.
8. Enlist support.
If and when you feel comfortable enough to share your news with a wider audience, don't hesitate to ask for help. People are often eager to provide any support they can to those they know with terminal medical conditions. Even simple or routine tasks like doing laundry, getting groceries, caring for a pet, or cooking meals can make the people in your circle feel valued and useful. And soliciting that kind of support can enhance and maintain your social well-being as your illness progresses.
Social media platforms like Facebook can help you reach out and keep your friends, acquaintances, and loved ones informed and connected. Or you can set up a free private website through CaringBridge for sharing updates, making requests, and receiving messages of encouragement.
9. Get everything else in order.
In addition to your care plans and medical directives, you need to start thinking about a variety of other practical issues. For example, what do you want to happen after you pass away? Consider questions such as:
- Do I want a traditional funeral or memorial service?
- Do I prefer burial or cremation?
- Should I make my own funeral arrangements?
- Am I covered by life or final expense insurance?
- Have I drawn up my will? Does it need any updates?
- Do I have the financial resources to pay for any out-of-pocket care expenses?
- Who should get my pets when I'm gone?
- How should I handle my social media accounts?
- Should I name a digital executor who can manage my online accounts when I'm gone?
The more you get in order now, the greater peace of mind you can enjoy during the rest of your remaining time. So it's wise to consult with a trusted attorney, financial planner, and any other professional who can help sort out your affairs.
For instance, maybe you have questions about your life insurance or long-term care (LTC) insurance coverage. A trusted legal or financial professional can examine your existing policies and help you understand them. As an example, you can learn more about how, in term insurance, "terminal illness" is generally defined as one of the life-ending situations that is covered if you were diagnosed with it after activating your policy.
Or maybe you have critical illness insurance that you can tap into in order to help pay for various expenses that aren't covered through Medicare, Medicaid, or other means. Generally, critical illness covers most life-altering medical conditions, including terminal diseases. However, like most insurance policies, critical illness plans often come with some exclusions, so you need to read the fine print in order to make sure that your particular illness is one of the covered conditions.
Of course, some terminally ill seniors are still part of the workforce when they're diagnosed with their conditions. If you're one of them, you may wonder about things like your pension or employee disability benefits. Depending on your employer's particular plan, you can get your pension if you are terminally ill and already at retirement age. Some pension programs also allow employees to access their funds early if they have a terminal illness and haven't yet reached their plan's defined retirement age.
Terminally ill seniors with employee disability benefits can often receive funds if they are unable to continue working for the remainder of their lives, a condition often termed "total permanent disability" (TPD). Usually, TPD covers cancer (at the late stages), dementia, advanced heart disease, and many other types of terminal medical conditions when they become debilitating and effective treatments are no longer available.
10. Stay active and engaged.
Having fun and staying socially connected—as much as possible—is essential for enhancing your quality of life. Regardless of whether you're getting treatments or just managing your symptoms, staying engaged in life's daily activities will help you feel like you still matter. A lot of seniors with terminal illnesses go about this by:
- Playing games
- Doing crafts
- Finding old friends
- Traveling while they're still able to
- Playing with their dogs
- Taking up yoga
- Learning new hobbies
- Writing letters or making videos for their friends and family
- Attending social gatherings
- Finishing creative projects
Incidentally, you can get travel insurance if you have terminal cancer or another terminal illness. However, under most policies, you generally can't make a claim for anything that is a direct result of your condition. For instance, you may not be covered for any costs arising from being treated or hospitalized for your terminal illness when traveling.
On another note, it can be useful to maintain a daily diary of your pain and other symptoms. That way, you and your doctors will be able to more accurately assess how quickly or slowly your illness is progressing. The practice of keeping a diary may also help you stay more mindful of the present moment and less inclined to look too far ahead.
How Can I Cope Emotionally With My Terminal Illness?
Following the 10 steps above will go a long way toward helping you cope. Just keep in mind that it's normal and healthy to experience a full range of emotions, even the uncomfortable ones. In fact, effectively coping with terminal illness may require fully embracing the difficult emotions (at least temporarily) instead of trying to push them away.
When you're living with a terminal illness, inspirational words can certainly be nice to hear or read. But for some patients, a kind of "inspiration fatigue" can set in and eventually do more to lower their spirits than raise them. After all, with so much positivity coming at you, it can start to feel like you're doing things wrong—especially if your experience doesn't match the stories you read or see on TV about the most upbeat patients, some of whom have seemingly even cheated death.
All of the inspiring and cheerful portrayals of terminally ill patients in the media can also make you feel like you have to constantly show a positive and hopeful attitude in order to get any sympathy. As a result, you may feel tempted to pretend that you're upbeat and optimistic, even when you don't feel that way.
But, in most situations, your job isn't to prevent other people's uncomfortable feelings about your illness. Your job is to be fully you. Whether positive, negative, or somewhere in between, your emotions can help you and other people better understand your current reality.
Pretending that your difficult emotions don't exist can become exhausting and lead to problems like depression. "Thinking positive" and "faking it 'til you make it" may work for some people, but you shouldn't feel bad if it doesn't work for you. We're all different.
A lot of terminally ill seniors do best when they utilize a variety of coping tactics. For example, you might try:
What Should I Do If My Friend or Loved One Is Terminally Ill?
First, don't panic. You can get through this. Many people like you are going through the same thing as they face the unwanted reality of their friends' or family members' terminal illnesses. In fact, it's a fairly common experience, especially among adult children of terminally ill seniors. So you aren't alone if you don't quite know how to talk to a parent with terminal cancer or any other kind of terminal condition.
Nobody wants the people they care about to die. Yet, in at least one way, a diagnosis of a terminal illness can be a gift for patients and their loved ones. After all, it gives you a little time to prepare yourselves and say goodbye in the way you both want. By contrast, a sudden, unexpected death would give you no chance at all to do that.
Still, this is not an easy experience. Even though your friend or family member is the one with the terminal illness, you'll likely be profoundly impacted. So it's essential to know how to navigate the experience in a way that helps foster the greatest possible well-being for you and the terminally ill person you care about. Here are some of the approaches that often work best:
1. Show up and just listen.
Your presence may be all that's necessary to comfort the person you love. You may not have to say or do anything except provide hugs and listen without judgment. You don't have to ask questions or offer advice or go out of your way to demonstrate your love or usefulness. And you don't have to play the role of therapist or spiritual counselor.
Let your friend or loved one choose when to share his or her thoughts and feelings with you. You can invite that kind of sharing, but don't try to force it. When the sharing does happen, stay open and allow it to take whatever form it wants to.
Even if a flood of confusing or distressing thoughts and emotions are being shared—such as fear or denial—let them come, without interrupting the flow or trying to offer solutions or a sunnier perspective. Simply provide a safe space for the person you care about to release and process those feelings.
2. Learn about the kind of care and support your friend or loved one needs.
By showing that you're open, nonjudgmental, and happy to listen, you create an atmosphere of trust in which the other person feels comfortable talking about what he or she really wants and needs. That's when you can discover how to best lend your support going forward.
Some terminally ill seniors want help deciding what to do about their treatments, care, or other affairs. But many others simply want to be supported in what they have already decided to do. Listen, learn, and figure out how to define your role in a way that aligns with your friend or family member's wishes.
It could be that you simply need to be present or help foster a sense of normalcy. Or, on the other end of the spectrum, perhaps you need to be more involved in handling practical matters or advocating for the best care possible on behalf of the person you love. Just remember that it's usually better to let him or her make that decision.
3. Nurture the best qualities of your relationship while keeping an open mind to potential changes.
Every relationship has its own special dynamics. In the face of a terminal illness, the most positive points of connection are needed more than ever. It's a time to build upon your existing bond with the other person, creating more bridges while finding gentle ways of working around any obstacles.
Through it all, remember that his or her personality may seem to change in ways that alter the relationship dynamic. But if you accept those changes, you might have the opportunity to deepen the relationship and make it stronger.
4. Find healthy ways to cope with your own grief.
There's no question about it: You will experience a range of emotions that may challenge your ability to handle the circumstances. But many of the tips above for coping emotionally with a terminal illness can help you just as much as your friend or loved one. It's vital to prioritize your own self-care so that you can provide the best support possible to the terminally ill senior in your life.
Remember that it's normal to feel guilt, worry, sadness, and other troubling emotions in this situation. But if the stress starts to feel overwhelming or you find it difficult to carry out your own day-to-day activities, it's imperative that you seek help from a professional counselor or therapist. Otherwise, you run the risk of becoming depressed or even physically unwell.
5. Seek unity with your family.
When someone is diagnosed with a terminal illness, the impact on his or her entire family can be immense. In fact, it can reignite long-held conflicts or resentments, causing extra turmoil at a time when the opposite is needed. After all, family members often have to work out who will take on various financial and caregiving issues. Plus, when everyone is feeling heightened stress and emotion, communication can break down, patience can wear thin, and misunderstandings can reign supreme.
That's why it can be useful to hire an objective third party, such as a family therapist and/or geriatric care manager—someone to help the family navigate the grieving process and any practical matters that must be handled. But even without the help of a professional, it's possible to work toward family unity.
Focus on communicating openly and honestly. Listen attentively. Remind each other that your loved one needs all of you to come together. And look at this time as an opportunity to heal old wounds and move forward in a generous spirit of unconditional love, perhaps in new or redefined roles.
6. Speak with care and compassion while avoiding common pitfalls.
Knowing what to say to someone with terminal cancer or another terminal illness can definitely be challenging. As previously mentioned, you may not have to say anything at all. But when you do speak, it's often essential to pay special attention to how you're saying something. Give your friend or loved one your full attention and keep your body language open and relaxed so that you don't appear defensive or aggressive.
In terms of what you say, always remember that the person you care about is going through a unique experience. Trying to relay a story about someone else's similar situation can make you seem uncaring or out of touch. Your friend or loved one wants you to understand his or her distinctive experience. By the same token, try to avoid implying that the person's terminal illness was somehow caused by his or her choices or brought about as part of some grand cosmic plan.
Sometimes, the best things to talk about are joyful memories or funny or fascinating current events, movies, or TV shows. Try to share some laughs. And if you want to offer words of hope and encouragement, always be sensitive to the reality of the situation. (Don't push the belief that a miracle will happen.)
7. Don't intervene or offer solutions unless it's requested or becomes absolutely necessary.
Your friend or family member may already have a solid plan in place. Respect it. You may not agree with all of his or her choices, but it isn't your life that's coming to an end.
You don't need to actively research potential cures or treatments. In fact, it's better if you don't—unless you're asked to. The person you care about may be putting a lot of effort toward accepting the reality of the situation and probably already knows about the various options. Allow the terminally ill senior you care about to choose his or her own final journey.
Only consider intervening if essential responsibilities aren't being handled or you see clear signs of self-neglect or elder abuse that run counter to your friend or loved one's wishes or that unnecessarily harm his or her remaining quality of life.
For instance, some terminally ill people (and/or well-meaning family members) fall victim to costly scams and misleading marketing for so-called "miracle" cures or treatments that aren't actually supported with substantial peer-reviewed scientific evidence. That's because the hope for a miracle can make terminally ill people and their loved ones more gullible than they otherwise would be.
Such scams can not only drain financial resources, but also cause medical harm that shortens a terminally ill patient's life even more or leads to new symptoms or complications that must be managed. For example, a lot of unproven treatments are related to things like essential oils, supplements, special diets, and energy-based therapies.
8. Ask about your friend or loved one's end-of-life preferences.
Don't assume that the person you care about will want you to be present at the time of his or her death. Some people prefer to pass away in private. So it's best to discuss this subject ahead of time, keeping in mind that terminally ill people sometimes change their minds as they get closer to the end.
9. Accept that the moment of death is out of your control.
Even if your friend or loved one wants you present at the end, it is unrealistic to be at his or her side on a constant basis. You'll need to take care of yourself, which includes eating, getting enough sleep, going for short walks, and taking care of your own basic bodily functions.
It's perfectly OK to take breaks and let other people maintain a presence in your place. Simply say "I love you" each time you take a break and leave the room.
Embrace the reality that the person you love may pass away while you're gone. If that's what happens, don't beat yourself up. You haven't let your friend or family member down. It's beyond your control.
But if you do happen to be present for the end, remember that the actual moment of death isn't always easy to detect. It may require confirmation from a nurse or physician.
10. Give your friend or loved one the space, comfort, and permission to let go.
Some terminally ill patients try to hang on as long as possible for the sake of their loved ones. They often don't feel right about giving up the struggle while those they care about are still hanging around and supporting them. That's why you and your family might need to give your terminally ill loved one the permission to move on.
Even if he or she is unconscious, your words may be heard, and your presence may be felt. So it doesn't hurt to say that it's OK to let go, perhaps while gently stroking your loved one's arm and holding his or her hand. And if you think or know that your loved one wants privacy in order to feel comfortable passing on, go ahead and provide it.
11. Get support when your friend or family member passes on.
If you're present for the moment of death, take the time you need to sit with your loved one. You don't have to notify anyone right away. But as soon as you're ready, be sure to let the appropriate professionals know so that the death can be medically confirmed.
You've likely done a lot of grieving up to this point, but you still may not feel prepared for the moment your friend or loved one actually passes on. So don't hesitate to reach out to others for emotional support. Many people find it helpful to talk with a grief counselor.
How Do I Make Difficult Decisions About End-of-Life Care?
The answer to this question usually comes down to the potential amount of additional suffering involved. However, a lot of people don't give this subject the deep consideration it deserves—until it's too late. In fact, in a survey by Pew Research Center, nearly a third of Americans said that "everything possible" should always be done to save someone's life. Yet, in a lot of situations, "everything possible" can greatly reduce a terminally ill patient's remaining quality of life.
That's why it helps to ask questions that can provide more clarity, such as:
Here's something you may not know: A lot of physicians who become terminally ill choose to forgo the kind of aggressive end-of-life care that many of their own patients expect to receive. They view a lot of treatments as futile, costly, excessive, and likely to cause unnecessary suffering and a less-than-peaceful death. For example, consider these common situations that are often caused by a "do everything possible" approach:
The most aggressive end-of-life interventions tend to take place in hospitals. That's why, on average, it costs about $32,000 to keep a terminally ill patient alive in a hospital during his or her final month, according to Arcadia. In a nursing home, it costs about $21,000. In contrast, care in a hospice facility costs less than $20,000, and home care costs less than $5,000. Choosing palliative care at home or in a hospice facility also tends to result in a more peaceful and comfortable death.
When a terminally ill patient is unconscious and put on a life-support system, such as a ventilator, decisions for his or her family members can become especially difficult. That's why it's essential to think about all of this ahead of time. If you are terminally ill, make sure you consider preparing advance directives so that you minimize the chances of your family members having to make these kinds of decisions on your behalf.
Request an open and honest conversation with your doctors about all of the potential end-of-life interventions and the benefits and drawbacks of each one. And make sure you understand what each type of advance directive covers so that you can prepare them according to your wishes, leaving as few gaps as possible. (For example, many people don't realize that a feeding tube is not included in a do-not-resuscitate (DNR) order. Typically, a DNR only covers interventions such as CPR, defibrillation, breathing tubes, and certain medications.)
You should also know that, upon admission, all medical facilities in the U.S. are required to provide patients with information about their decision-making rights. They must ask you whether you have any advance directives. And they must comply with those directives.
You have the right to refuse any kind of medical intervention. Always make sure that your physicians, nurses, and family members know your wishes when it comes to the specific kinds of end-of-life interventions you do or do not want to receive.
If you are a family member of a terminally ill patient who is incapacitated and hard decisions need to be made in the absence of appropriate advance directives, then it's important to ask good questions. For example, depending on the situation, your questions may need to center on issues like:
It helps to have just one person in a family act as the point of contact for the medical team. It's also important to let medical staff know about any of your distinctive family traditions, preferences, or cultural beliefs related to dying.
But here's one of the most essential tips: Don't stop with this article. This subject is so nuanced, complex, and emotionally charged that you really should learn about it in a more in-depth way, from people with deep knowledge and relevant experience in these matters. Some of the best books to read include:
Prioritize Your Peace of Mind
The more you know about terminal illness and the options that exist for moving forward, the easier it may be to cope with the various challenges and discover the right path. Through it all, always remember that support is widely available if you need it.