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Information about all aspects of finances affected by a serious health condition. Includes income sources such as work, investments, and private and government disability programs, and expenses such as medical bills, and how to deal with financial problems.
Information about all aspects of health care from choosing a doctor and treatment, staying safe in a hospital, to end of life care. Includes how to obtain, choose and maximize health insurance policies.
Answers to your practical questions such as how to travel safely despite your health condition, how to avoid getting infected by a pet, and what to say or not say to an insurance company.

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Overview

No one knows what will happen to any individual or when until it happens - even with metastatic breast cancer that appears to be at an end stage. 

Still, while it may be painful to think about, it is inevitable that at some point we all die. As wonderful as modern medicine is at prolonging life, it has not yet been able to overcome death.

Unless the end of life is very near, no one knows the future.

  • Predicting how long someone will live is not exact. Every patient is different. 
  • Some patients live long past the time the doctor first predicted. Others live a shorter time. Also, an infection or other complication could happen and change things.
  • Your doctor may know your situation best, but even he or she cannot know the answer for sure even when taking into account your type of cancer, treatment, past illnesses, and other factors.
  • In truth, none of us knows when we are going to die. Unexpected events happen every day.
  • The best we can do is try to live as fully as we can today - and prepare "just in case".

Your Choice: How You Live

It is your choice how to live the remainder of your life. You can have hope, look for joy and live each moment while you can. You can just lie down and let go. Or you can live anywhere in between.

No matter how certain things seem, you can still have joy in your life. There is always reason to hope.

It helps to look for humor - even if it is watching old I LOVE LUCY reruns. Laughter can help you relax. Even a smile can fight off stressful thoughts.

Your Choice: Medical Care

Just as you have control over how you live, you also have the ability to control the last period of your life.You can request good medical care until your last breath.

As a practical matter, It is your choice whether to keep trying to control or eliminate your breast cancer, to choose no treatment except pain relief, or to choose an in-between path. It is also your choice how much of your personal and financial resources you are willing to spend and for how long. It is even your choice how to make the decision. If it comes to that, there is also the option to have terminal sedation so that the end of life is painless.

If you want to assure you will be able to stay in control of medical decisions even if you become unconscious or unable to communicate, or if your lose your mental ability, execute the legal documents generally known as Advance Health Care Directives and Advance Directive For Mental Health

Writing legal documents about events that could happen is not going to make them happen. The documents and discussions that accompany simply make it more likely that you will get the care you want and that you won't receive the treatments you don't want. Just executing the documents can bring peace of mind.

Whatever you decide now:

  • Whatever you decide, you can change your mind as often as you desire.  Advance Directives can be revoked or revised on a moment's notice.
  • There is no reason to live with pain. Do not be afraid of becoming addicted to pain medication. It is not common in this situation. If your doctor is not aggressive about reducing or eliminating pain, you can bring in a doctor who will provide such care. Don't be surprised if one of the suggestions for reducing pain is palliative radiation (radiation whose goal is pain control instead of a cure), chemotherapy or surgery.
  • To be sure to get the medical care you need, see Managing Your Medical Care.
  • Let your medical team know your wishes about continuing medical care. If you don’t feel strongly about wanting or not wanting specific treatments, you can tell your medical team your general wishes. They can fill in the blanks as needed.

An Alternative To Consider: Comfort Care (Hospice)

If you decide comfort is your goal rather than continue to fight the disease, care known as hospice care is available.

Hospice care provides physical and emotional comfort to you and your family in a variety of settings, including in your home.

Hospice care is generally available for free if necessary.

Terminal Sedation

If end of life is near and you want to be relieved of pain and anxiety, terminal sedation is an option to consider.

Home Care Is Available

Medical and personal home care is available if needed. There are even doctors who make house calls.

Home care is generally covered by health insurance. If it isn't, you can save money by hiring health aides yourself instead of using an agency. Organizations to which you belong, including religious organizations, may be able to provide volunteers to help.

Tell People About Support You Need 

Let your family and friends know about what support you need, including chores or activities you have difficulty doing. Do not make them guess. They cannot read minds.

Talk about your emotions. In addition to the people closest to you, consider speaking with a clergy person or spiritual guide. Professional help is available if you want.

Talk About Your Emotions

In addition to the people closest to you, consider speaking with a clergy person or spiritual guide.

You can likely find people in a similar situation in support groups (which are available on line and on the telephone in addition to in person). If it better suits your personality, look for a cancer buddy.

Professional help is available if you want.

Get Your Affairs In Order

If you haven't already, it is wise to get your affairs in order now. At the least:

  • Make plans for your children so they are taken care of if you become incapacitated or die.. 
  • Everyone should have a Will. (Actually, everyone has a will. If you don’t have a valid one, the state you live in fills in the blanks for you. Is that what you really want?)
  • Consider putting together an Ethical Will.  An Ethical Will passes to your heirs information they should know such as your family history, what you learned in your lifetime, and whatever else is important to you. You can create this legacy in whatever way is easiest for you. For instance, by writing a letter, or by putting together a scrap book with annotations.

If you have made plans, review them to be sure they are still what you desire.

If you want to save your heirs unnecessary expense and stress, consider pre-planning your funeral. Pre-planning is different than pre-paying. Survivorship A to Z provides practical information about planning and saving money on a funeral. 

How To Assure Visitation From A Partner

If you are part of an unmarried couple (heterosexual or homosexual), it is advisable to take steps now to assure your partner will be able to visit if you end up in a healthcare facility. For instance, appoint him or her your Health Care Proxy under a Health Care Power Of Attorney to make medical decisions in case you can’t. (See "To Learn More.")

Leaving the planet early

If you want life to end before nature takes its course, speak with your doctor. Most deaths in this country are negotiated between patients and their doctor. As an alternative, while we do not recommend it, there is also the possibility of assisted suicide and ending your own life.

As an alternative, while we do not recommend it, there is also the possibility of assisted suicide and ending your own life.

Finances

If you haven't before, this is a good time to consider at least turning over financial matters relating to your health care to a family member or close friend. In any event, the following articles help maximize your financial situation or show you how to qualify for Medicaid.

Someone to speak with about these subjects

If you prefer to talk with someone about these issues other than your immediate family and friends, speak with your social worker or other mental health therapist, people in a breast cancer support group, a member of the clergy, or contact the American Cancer Information Center twenty four hours a day, seven days a week at 800.ACS.2345.

For more information, see: 

Preparations To Make In Case Of A Medical Emergency

While emergencies can happen to anyone, you may be more vulnerable to emergencies because of your health history. It is suggested that you take a few minutes to prepare "just in case."  You do not have to take all these steps at once. Perhaps do one a day. It is helpful to give yourself a deadline. 

If it would be useful, the Survivorship A to Z prioritizer can help keep track of the steps you want to take. You can then number them in order of priority. A push of a button will change the order of the list to your priority. 

Consider:

  • The types of emergency care available near your home, where you work, and any other place in which you spend substantial amounts of time. Learn when to go to which resource - for instance, emergency rooms or urgent care facilities. While you're at it, learn how to maximize your time in an Emergency Room.  
  • Consider carrying:
    • An alert that will let first emergency responders know about your medical condition in case you become unable to communicate.
    • Easily identifiable indicia that you do not want to be brought back to life (resuscitated) if your heart stops – if that is the case. 
  • The financial and legal steps to take now so you are prepared in the event of a medical emergency. See: Medical Emergency: How To Be Prepared.
  • If you live in a disaster prone area, how to get through a disaster. See 
  • How to prepare for medical emergencies that may come up during travel. For information, see Travel 101
  • What to do if you have underage children and cannot care for them because of a medical emergency. See: Children 101

NOTE: While speaking about emergencies, be sure your property and pocket book are protected in the event of a loss with Homeowners Insurance and Automobile Insurance

To Learn More

If You Are Likely To Be Hospitalized Or Enter An Assisted Living Facility Or A Nursing Home

If you are likely to enter a health care facility such as a hospital, assisted living facility or nursing home, choose the facility with care. To learn how, see the links at the end of this article.

If there are circumstances in which you do not want aggressive medical care, your doctor can tell you whether a particular facility will honor your wishes. If a facility will not follow your wishes, there is likely to be one nearby that will. If the medical care is much better at a facility that will not honor your end of life wishes, consider the following steps:

  • Execute a Health Care Power of Attorney appointing a Proxy who will be empowered to make medical decisions when you can't. (A document for your state is easy to obtain and is free)
    • Discuss with the person you appoint as proxy what you do or do not want done and in what circumstances. Include an overview of your wishes so he or she has guidance for answering questions that the two of you don’t think to talk about.
    • Be sure that one of requests you discuss with your Proxy is to move you from one health care facility to another if the first one refuses to comply with your wishes.
    • Execute other Advance healthcare Directive documents such as a Living Will in case there is a dispute about your wishes.
  • Let your doctor know that you will enter the suggested facility, but that if you reach an end stage, you want to be transferred to another facility that will honor your end of life wishes. Give the doctor a copy of your Health Care Power of Attorney, and the contact information for the person you appoint as Proxy.  Give another copy of the Health Care Power of Attorney to the health care facility. Also give the facility a copy of any other Advance Directives you execute.

If You Have A Partner Instead Of A Spouse: Visitation

Whether your partner is of the opposite sex or of the same sex, hospitals and other health care facilities may treat the person differently than a spouse even though they are not supposed to. As a result, the person you care most about may be denied visitation all together, or visitation may be limited.

To be sure the person can visit when desired, the best approach is to learn about a health care facility's position before entering the facility. If that is not possible, your partner will have to learn how to navigate the system.

As a general matter, hospitals and other health care facilities have a right to determine visitation. Patients do not have a right to be visited. If visitation is permitted, facilities which accept Medicare are not supposed to have different rules for partners than for spouses.

If the person is of the opposite sex, while we don't condone lying, the practical answer may be for the person to say that he or she and you are married. Health care facilities seldom check.

If the person is appointed your Healthcare Proxy, he or she could add conditions when asked to make a medical decision. For instance, he or she could use the magic words "informed consent" and say something like: "I can't make an informed consent on behalf of the patient until I see (him)(her)." There can also be an insistence before the decision is made to have visitation rights with the patient on an ongoing basis to be able to make other decisions as the need arises because of "an ongoing duty in the patient's interest."

For more information, see:

Choose To Live Each Day To The Best You Can. Stay Hopeful.

No matter how much or how little time we have on this planet, it is up to every one of us to live each day to the fullest extent we can.

The following tips have helped other people:

  • Work on focusing on what you do have, rather than what you lost.
  • Balance expectation and hope. As Wendy Harpham, a doctor and several time cancer survivor said: "Expectation is a state of mind; hope is a state of heart."
  • If you are up to it, take that trip you always wanted to take. It is fairly easy these days to travel with a disabling condition provided you prepare and take reasonableprecautions. 
  • Spend time with people who are important to you.
  • Look for meaning in the experience.
  • Make peace with people and right old wrongs.
  • Say now what you want each person to know.
  • Seek to make things right within your own faith.
  • Forgive yourself.

For additional information see:

It Is Your Choice Whether To Keep Fighting, How Hard, And For How Long

There is no right or wrong when it comes to what to do when the end of life is likely to be near. While your religion, ethnic community or family may have other thoughts on this matter, bottom line it is your life. As long as you are mentally competent, it is your choice.

It is even your choice how to make a decision: whether on your own, in consultation with family and friends, your clergyman, and/or in consultation with your medical team. Experience indicates that is easier to at least involve the people closest to you.

Ultimately, we are talking about your life. The final decision is yours.

Even after you are no longer able to speak for yourself, you can stay in control if you execute easy-to-obtain, free, documents known as Advance Health Care Directives ahead of time. To cover in case you become mentally incompetent, you can stay in control by executing an Advance Directive For Mental Health 

  • Even the woman who wants to be as aggressive as possible in fighting breast cancer may say something like: "It's time. The treatments are not working. There is no cure in sight. The treatments are keeping me from having any life at all. I'd rather just be comfortable and as pain free as possible. I'd just like to spend time at home with my family."
  • Or there may be an in-between course in which you choose which procedures and/or treatments you want and which you don't want, and under what circumstances, while receiving care for pain and other side effects.

If you haven't before, and if there are no further standard treatments to treat your condition, consider trying cutting edge drugs by joining a clinical trial. In addition to the possibility of being helped, you may receive free medical care. At the least, you will be helping other people in a similar situation.

Remember that:

  • You don’t have to live in pain. It is your choice whether to live with pain and other symptoms, and, if so, to what extent.
  • If you choose to stop receiving medical care aimed at curing you, you can always change your mind and start treatments again.

Even after you are no longer able to speak for yourself, you can stay in control if you execute easy-to-obtain, free, documents known as Advance Health Care Directives ahead of time. In particular, consider a Healthcare Power Of Attorney. To cover in case you become mentally incompetent, you can stay in control by executing an Advance Directive For Mental Health

For additional information, see:

To Learn More

Related Articles

Living Wills

If A New Treatment Plan Is Recommended

If new treatments or changes in your treatment are suggested, ask the same kinds of questions that should be asked about a recommended treatment at any time in your life.

Particularly focus on the goals of the recommended treatment and what would happen to your quality of life. For instance, ask:

  • What is the goal of the treatment? Is this treatment plan meant to help reduce side effects, slow the spread of breast cancer, or both?
  • What is the best we can hope for by trying another treatment?
  • Will my taking the treatment benefit other women with breast cancer?
  • What side effects are likely to accompany this treatment?
    • How severely?
    • How much can they be controlled?
    • What will the effect be on my quality of life?
  • For additional questions, see: Questions To Ask Before Deciding About A Treatment

If you have pain, do not be surprised if the recommended treatment is palliative radiation (radiation whose goal is pain relief rather than cure), chemotherapy or surgery. The objective of these treatments is to improve your quality of life even if they don't stop your cancer. Palliative chemotherapy and palliative radiation may help relieve pain and other symptoms by shrinking or removing a tumor or by slowing a tumor's spread.  

NOTE: Keep in mind that you are entitled to comfort care both during and after treatment.

For information, see:

How To Cope With Physical Issues

Each of the following symptoms may show up from time to time. They are all treatable and can be controlled. They can possibly even be eliminated. The links show you how to cope with particular symptoms.

  • Pain.
    • Many doctors under treat pain. If your doctor won’t prescribe the pain medication you need, there are doctors who specialize in treatment of pain who will.
    • Do not be concerned about becoming addicted to pain medication. It seldom happens in this situation.
  • Difficulty eating
  • Shortness of breath.
  • Inability to sleep normally.
  • Fatigue.
  • Diarrhea.
  • Constipation.
  • Nausea and vomiting.
  • Loss of appetite.
  • Looking good.
    • For your hair: barbers and hairdressers can come to your home or wherever else you are. If your barber or hairdresser doesn't usually make such visits, he or she may do it for you if you have a relationship with each other.
    • If you want make up tips, call the American Cancer Society and ask about the "Look Good, Feel Good" program for a self help kit. You can call 24 hours a day: 800.395.5665

To Learn More

How To Cope With Emotional Issues

Emotions To Anticipate

As the end of life approaches, it is normal to experience a variety of feelings, and sometimes more than one at the same time. Feelings to anticipate include the following common ones:

Dr. Elizabeth Kubler-Ross defined the five stages in which emotions can be expected at the end of life. Experience has shown that there is no particular order in which the stages show up and no standard amount of time for which they remain. In fact, you may experience emotions from more than one stage at a time. Previously felt emotions may return.

The five stages are:

  • Denial
    • Denial that you are going to die.
    • Denial can make you feel as if you are in a dream and going to wake up, or that the doctor or laboratory has made a mistake.
  • Anger
    • Anger can start with the question: "Why me?" or "Why now?"
    • It is worth trying to channel anger in a neutral manner  instead of taking it out on the people closest to you or the medical staff. One way to channel anger is to break a batch of inexpensive plates.
  • Bargaining
    • Attempting to bargain with a higher power such as God or Buddha: "If you spare me, I will....."
  • Depression
    • In addition to the loss of your own life, depression is often prompted by the things you will no longer do, or separation from the people you love, or the dreams that won't happen.
    • Depression can be treated with medication and/or with discussion with a professional mental health provider.
  • Acceptance
    • Acceptance that life is going to end and becoming peaceful about it.

How To Cope With Emotions

There is no one size-fits-all coping mechanism. The following ideas have helped people cope with emotions, particularly as end of life nears:

  • Experience shows that the best coping mechanism is whatever helped you get through other crises in your life.
  • Openly share your feelings with friends and family
    • Let family members and friends know that you are still hopeful despite discussing the subject of death and the fear of it. This is so even if the hope is "just" for a good quality of life.
    • It may be helpful to remind people that talking about something doesn't make it happen - just as not talking about it does not mean it won't happen.
  • Consider joining a support group or self help group of people in a similar situation. If you can't leave the house, you can participate over the telephone or through the internet.  To find a breast cancer support group, click here.
  • Consider making contact with another individual going through the same thing you are. We call such a person a cancer buddy.
  • If you haven't before, look for meaning in life. Meaning helps provide sense to what is happening.
  • If you need assistance with coping or finding meaning, consider the following:
    • Get professional help from a psychiatrist, psychologist or social worker - particularly one that is experienced in end-of-life issues.
    • Priests, rabbis, inmans and other religious and spiritual teachers can provide counseling, solace, and help with meaning. You do not have to be a member to ask for their counsel.
  • No matter what is going on, look for humor. For instance, watch comedy television shows. Keep in mind that comics find humor in every situation.
  • For specific emotions, see the documents in "To Learn More."

NOTE: Music may be comforting. Toward the end, Chalice Of Repose arranges for a person to play peaceful music live (for example, on a harp).To learn more, see: www.chaliceofrepose.org offsite link. Alternatively, a local hospice or disease specific nonprofit organization may be able to make arrangements for peaceful, emotionally healing, music.

For additional information, see:

How To Deal With Financial Issues

If You Are Insured

If You Do Not Have Health Insurance (uninsured)

  • There are techniques for obtaining the care you need. See Uninsured.
  • If you have limited income and resources in addition to a house and car, you may qualify for Medicaid (Medi-cal in California). 
    • If you have more resources than allowed, your state may still let you qualify for medical care other than nursing home care. To learn how, click here.
    • To learn about the law in your state and how to apply for Medicaid (Medi-cal),  look for a health insurance assistance program, by clicking here offsite link. or by going to www.familiesusa.org  offsite linkand type "health insurance assistance program" in the search area. 

If You Have Financial Concerns

For information about maximizing your resources (including information about how to borrow money from family and friends), how to deal with creditors, and new uses of your assets so you can get money from them without selling them. See How To Deal With A Financial Crunch Or CrisisTen Steps To Take In The Event Of A Financial Crunch Or Crisis, 

Financial assistance for children and families of people with a life expectancy of six months or less may be available through National Association for the Terminally Ill. Among other assistance, financial assistance may be available for telephone bills, home/auto repairs, electric bills, rent/mortgage, grocery vouchers and medications. To learn more, see: www.terminallyill.org offsite link.

If You Have A Credit Card With A Death Benefit On It: see : If You Have A Death Benefit On Your Credit Card

For additional information, see:

If You Have A Death Benefit On Your Credit Card

If you have a death benefit on your credit card, and have a balance when you die, the total amount of debt outstanding on the date of death will be paid off.

You can generally purchase something right up to the moment of death and it will be paid for by the death benefit.

To maximize use of the card (and increase the value of your estate):

  • Only pay the minimums due each month. The death benefit will pay off the balance.
  • Consider charging medical bills as you get a medical service. Although the custom may be to pay bills such as hospital bills when the patient is discharged, bills can be paid as time goes along. If you have insurance, your insurance company can reimburse your estate later.
  • If you can write checks on the account, check to see if there are any restrictions about the timing of writing checks and the purpose.
    • Consider writing a check for the credit limit to pay existing bills - or write a check to someone you care about. NOTE: As a matter of law, a check becomes invalid on death so checks you write should be deposited as soon as possible so they have time to clear "just in case."
    • Consider purchasing an asset your heirs can use. The Wall Street Journal reported on one fellow who used a check written on his credit card to pay for a down payment on a car. He obtained credit life insurance on the balance due for the purchase price. When he died, his wife received the car free and clear thanks to the combination of the death benefit on his credit card and the credit life insurance.

For more information, see:

What To Do About The Legal Issues

Minor Children: If you have minor children and no legal spouse, make sure personal and financial arrangements for their care are in place in case it reaches a point you are no longer able to take care of them or you die.

Last Will And Testament: Everyone should have a will. Your health status makes it more urgent that you have a will, and that it is up-to-date.

If you don’t have your own will, your assets will pass according to the laws of the state in which you reside. Do you want your assets to pass as dictated by the state or according to your own wishes?

  • If you have a will:
    • Review it to be sure it is up-to-date. If it isn't, you can make the necessary changes by an amendment without having to rewrite the entire will. (Please keep in mind that the amendment needs to be executed in the same manner as the will itself).
    • Check to see whether it is challenge proof. Money can make people do strange things. (See: How To Challenge Proof Your Will
  • If you do not have a will:
    • This is a good time to get one.  Wills are not expensive. As indicated in the documents in "To Learn More", you can even write one yourself.
    • Be sure to make arrangements for the personal items you care about to go to the people you want to have them. For instance, a watch to a favorite niece. 
    • Do what you can to make your new will challenge proof. Money can make people do strange things. (See: How To Challenge Proof Your Will
  • If you haven't already, discuss with your heirs how you are leaving your assets. It will assure your wishes are carried out. It also helps to prevent them from being unhappy over who got what, or battling each other over their inheritance.

Ethical Wills: Consider creating an Ethical Will - an informal document which passes to your heirs family history that you want to be passed on as well as life lessons you've learned. An ethical will can be in any form you desire. 

Beneficiary Designations: Check beneficiary designations on your life insurance and retirement plans to be sure the proceeds go to the people you want. Unless the documents list your estate as beneficiary, these funds are not controlled by what your Will says.

Funeral Arrangements: It may be difficult to think about, but it is advisable to preplan your funeral and burial arrangements. Making plans will assure you get a say in the matter. It will also save your heirs unnecessary expense and stress - particularly at a time when they are emotionally vulnerable and can be easily taken financially. For information, see: Funerals 101

A List Of Instructions: Completing a List of Instructions will let your executor/personal representative and heirs know where your assets are.

If the person who will be in charge of your estate (your Executor or Personal Representative) will need a road map to understand your finances, write one for him or her. Better yet, show the person where your financial papers are kept and describe complex arrangements. See: Where To Store Important Papers And Documents.  Once you set the location, consider writing a Document Inventory so the papers can easily be found. 

Safe Deposit Box: Make sure someone you trust has access to your safe deposit box. If you have a lot of valuables in your box that will not go to the person with the key, consider requiring two people to be present when opening the box.

Forgiveness: Make peace with people you care about. If you don't do it for them, do it for own peace of mind.

Business Owners: If you are a business owner, consider who will succeed you and what information will be needed. Also think about writing a "Business Ethical Will" that passes on what is important for your successors to know, including the history of the business and guiding values. See: Estate Planning For Business Owners.

Self Employed: If you are self employed, consider who you want to succeed you and what information will be needed. For more information, click here.

To Learn More

More Information

Estate Planning

What To Do If You Are Still Working

  • Learn about the disability income sources to which you may be entitled. For example, a disability income policy, a life insurance policy with a disability feature.
    • Check benefits at work. In addition to short and long term disability benefits, you may be entitled to vacation pay.
    • Look at the requirements for obtaining Social Security Disability Insurance (SSDI). It provides an income in case you become unable to work. You paid premiums for SSDI from withholding from your income. When checking to find out about SSDI, also check to find out if you do or can qualify for an income through the government program Supplemental Security Income (SSI).
    • If you are going to apply for Social Security Disability Insurance (SSDI): Only one third of applicants for SSDI are awarded an income. AWe provide easy-to-use information for applying as an educated consumer that makes it more likely to get a "yes." See: SSDI 101: An Overview (Social Security Disability Insurance)
  • If you have health insurance through work, compare what insurance you may be able to get in your state (see: www.healthcare.gov offsite link) with COBRA coverage. Start thinking about how to pay for the premium. If you are in a financial crunch or crisis, see: How To Deal With A Financial Crunch Or Crisis.
  • Check your life insurance and other benefits at work such as retirement plans to be sure the beneficiary is the person you actually want to be the beneficiary.
  • It is not too late to take credit card offers that may be mailed to you because you are working. If they have a death benefit on them, the amount of debt outstanding at the date of death will be paid off by the insurance company. Some cards even waive minimum payments while the cardholder is disabled.
  • Read: Leaving Work Because of Disability - The Steps To Take and Work: Preparing For Disability -- Short Term to learn about what to do before you stop work.  Also see: Work: Termination. These articles likely include information you haven’t thought about.

Business Owners: Consider who will succeed you and what information will be needed. Also think about writing a "Business Ethical Will" that passes on what is important for your successors to know, including the history of the business and guiding values. 

Self Employed: If you are self employed, consider who you want to succeed you and what information will be needed. Click here for information.

How To Talk With Family And Friends

It can be very hard to talk about nearing end of life and about death.  However, studies show that cancer care goes more smoothly when everyone stays open and talks about the issues. Many people are reassured and comforted by sharing feelings and taking the time to say what they need to.

Knowing that people cope with news in their own way will help everyone deal with their emotions. 

Decide which of your family and friends you want to tell about your health situation. There is no right or wrong. However, keep in mind that:

  • People need to know what is going on in order to be supportive.
  • Keeping a secret is stressful. The greater the secret, the greater the stress.
  • Children will likely sense a shift. They will assume they have done something wrong. Consider telling them in an age appropriate manner. Assure them they will be okay.

Your loved ones may need time to adjust to the new stage of your illness. They need to come to terms with their own feelings. Their feelings may include confusion, shock, helplessness, fear, sadness or anger. Let them know that they can offer you comfort just by being themselves and by being at ease with you. Ask them to listen when you need it, rather than try to solve every problem.

Remind people that you are still the same person you always were. Let them know if it's all right to ask questions or tell you how they feel. Sometimes just reminding them to be there for you is enough.

Some families have trouble expressing their needs to each other. Other families simply do not get along with each other. If you don't feel comfortable talking with family members, ask a member of your health care team to help. You could also ask a social worker or other professional to hold a family meeting. This may help family members feel safer to express their feelings openly. It can also be a time for you and your family to meet with your team to problem-solve and set goals.

Don't be surprised if relationships change. Many people have trouble coping with their own painful feelings. Not everyone can handle the thought that they might lose you. Other people may not know what to say to you or do for you. 

NOTE:

  • If you haven’t before, now is the time to have a discussion with your Healthcare Proxy (the person you appoint under a Healthcare Power Of Attorney to speak for you about medical care decisions if you become unable to communicate your self). Let him or her know your general feelings about matters so he or she has guidelines to help make decisions. Also let the person know that we ahve information about how to enforce a Healthcare Power of Attorney and other Advance Directives.
  • Consider making contact with other people in a similar situation. You can do this through a support group (in person, on line or over the telephone), a self help group (also available in person, on line or over the telephone) or with an individual such as a Cancer Buddy.

For more information, see:

Relations With Your Spouse Or Partner

It is very common for patients and their partners to feel more stress than usual as a couple. There is often stress about:

  • The fear of losing your partner.
  • The fear of losing the children's mother. How will the family survive?
  • Knowing how to give and get support.
  • Coping with new feelings that have come up.
  • Figuring out how to communicate.
  • The fear of losing a breadwinner or having extra expense to take care of the children.
  • Making decisions.
  • Changing roles.
  • Having changes in social life.
  • Coping with changes in daily routines.

Some people feel more comfortable talking about serious issues than others. Communication styles differ. The key is to communicate.

Following are some tips that may help:

  • If it is hard for you or your spouse/partner to talk things over, ask a counselor or social worker to talk with both of you together.
  • Be realistic about your demands on your spouse/partner.
  • Keep in mind that the other person may feel guilty about your illness even though guilt in this situation is misplaced.
  • There may be stress due to changing family roles.
  • Consider taking a brief vacation from each other.
    • Your partner likely needs some time to address his or her own needs. If these needs are neglected, your loved one may have less energy and support to give.
    • Remember, you didn't spend 24 hours a day together before you got sick.
  • Don't be surprised at changes in your relationship (including your sex life) as bodily changes occur in reaction to disease and/or treatment. 
  • When thinking about sex, keep in mind that there are many ways to achieve intimacy without physical sex. 

NOTE: It is particularly important to discuss with your spouse or partner:

  • What you want to happen with your physical and/or mental medical care if something happens and you become unable to communicate. You can keep control of the physical situation by signing documents known as Advance Health Care Directives and the mental situation by signing an Advance Directive For Mental Health. If your spouse or partner is not named as the person who will make decisions for you in line with your wishes, at least let your spouse/partner know your wishes so he or she does not fight enforcement of your wishes.  See: How To Talk With Family About Your Wishes If You Become Incapacitated And Can't Speak For Yourself
  • Your estate plans. Talking helps keep things smooth. 

For more information, see:

How To Speak With Your Doctor About Your Wishes

Do not expect your doctor to bring up the end of life subject. Not many do.

It is never too late or too early to discuss with your doctor what your feelings are about end of life. Your doctors and other members of your medical team do not know what you want unless you tell them.

A few topics you may want to discuss with your doctor or other members of your health care team are the following:

Pain or other symptoms

Be honest and open about how you feel about pain. Experience indicates that some people, particularly people who are agreeable by nature, do not admit to their doctor that they are in pain. If you want to suffer, so be it. Otherwise, let the doctor know if you have pain and where so he or she can suggest alternatives to stop or at least lower the amount of pain. There are even doctors who specialize in pain management.

Also tell your doctor what you can expect in the way of pain relief. Discuss the trade offs. For instance, full relief from pain may affect your ability to think clearly, or to stay alert.  An increase in pain medication can hasten death in a weakened body.

We have a Symptoms Diary to help keep track of pain. You can print it out and show it to your doctor instead of trying to remember what happened since your last visit. 

Treatments

Tell the doctor what kinds of treatments you do or do not want. Remember, it’s your body and your life. What treatments to take, or not, is up to you.

Communication

Decide what you want to know, how much you want to know, and when you have heard enough. Choose what is most comfortable for you. Some people want to know details about medical care and the doctor’s estimate of long you are likely to live (prognosis). Other people prefer to know as little as possible. 

Then tell your doctor and family members. Ask that they follow through with your wishes. (An Advance Health Care Directive such as a Health Care Power of Attorney makes sure your wishes continue to be communicated even if you become unable to communicate yourself.)

Family wishes

Some family members may have trouble dealing with breast cancer. They don't want to know how far the disease has advanced or how much time doctors think you have. Find out from your family members how much they want to know, and tell your health care team their wishes. Do this as soon as possible. It will help avoid conflicts or distress among your loved ones.

The Doctor’s participation

It is okay to ask your doctor for assurance that he or she will comply with your wishes for physical or mental treatment if you become unable to speak for yourself. It is one thing to express your wishes in an Advance Directive for Health Care or an Advance Mental Health Directive, but it is another for your doctor to comply with your wishes.

Also ask your doctor not to abandon you if a point comes when there is no longer anything he or she can do about stopping the disease's progression. Doctors have been known to abandon patients in this situation. It may help to let a doctor know that just his or her continuing presence and concern will help you remain hopeful even if there is nothing more the doctor can do medically. 

Don't be surprised if your doctor is uncomfortable with the discussion. After all, his or her training is to keep people alive. It's only recently that medical schools are starting to teach about end of life.

The circumstances

Many people are not as concerned about dying as about how they will die, including the fear of dying in pain and of dying alone. If you have these fears, discuss them with your medical team and family. When someone dies of cancer, there are physical signs of slowing down that are recognizable by a medical team. Generally the professionals can alert you and your family in enough time that they can be with you.

Bring up your concerns about a fear of loss of dignity if you have them.

If your doctor disagrees with what you want, ask whether the doctor will nevertheless carry out your wishes. If the doctor is not willing to do what you wish, consider switching doctors. Yes - even now it's not too late to change doctors to one who is a better fit with your needs. See: How To Switch Doctors.to learn how to make the switch).

For additional information, see:

How To Talk With And Provide For The Care Of Children

Talking With Minor Children

Keeping your children's trust is very important. Children can sense when things are wrong. It is best to be as open as you can about your breast cancer.

Children may worry that they did something to cause the cancer. They may be afraid that no one will take care of them. They may also feel that you are not spending as much time with them as you used to. Although you can't protect them from what they might feel, you can prepare them for these feelings.

Children: Telling The News provides general guidelines for telling underage children and tips for different age groups. Also see: 

Talking With Adult Children

Your relationship with your adult children may change. You may have to rely on them more. It may be hard for you to ask for support. After all, you may be used to giving support rather than getting it.

Adult children have their concerns, too. They may start to think about their own mortality. They may feel guilt because of the many demands on them as parents, children, and employees. Some may live far away or have other duties.

They may feel bad that they can't spend as much time with you as they would like.

Often it helps to:

  • Share decision-making with your children.
  • Involve them in issues that are important to you. These may include treatment choices, plans for the future, or activities that you want to continue.
  • If they aren't able to be there with you, keep them updated on your progress. (For tips on keeping people to date, click here).
  • Make the most of the time you have. 
  • Try to reach out to your adult children. Openly sharing your feelings, goals, and wishes will help them adjust. It will also help prevent problems in the future.

Please keep in mind: Just as parents want the best for their children, children want the best for their parents. They want to see your needs met effectively and with compassion. 

How To Maintain Control Even If You Become Unconscious Or Unable To Speak For Yourself

In order to maintain control if you become unable to speak for yourself:

  • Execute a Health Care Power Of Attorney and/or other Health Care Advance Directives and Advance Mental Health Directive so your wishes can be known and carried out.
  • Even with Advance Directives, you will need the cooperation of your doctor.
    • If you have more than one doctor treating you, pick one to be in charge of following through on your wishes if you become unable to communicate for yourself.
    • Discuss your wishes with the lead doctor if you haven't already. Let the doctor know whether you want pain to be controlled to the maximum extent, even if that control could hasten your death.
    • If your doctor doesn't agree with your choices, and doesn't convince you to change your point of view, will he or she nonetheless carry out your wishes? If not, consider changing doctors. See: How To Switch Doctors
  • Talk with your family about your desires. If you become unable to communicate, they will likely be consulted no matter what you say in the Advance Healthcare documents. Even though doctors and hospitals are protected by the documents you sign, they do not want to be sued.  See: How To Talk With Family About Your Wishes If You Become Incapacitated And Can't Speak For Yourself

If you have already executed Advance Directives:

  • Revisit them to be sure they reflect how you still feel. What we feel when we’re healthy and what we feel when faced with an imminent situation may be very different.
  • If you executed them more than a year ago, initial them and add the date so people are sure you still feel the same way. Otherwise there can be an unreasonable delay while people argue over your wishes.

If you had a discussion with your Proxy about your wishes, have another one to reconfirm your current thoughts.

Let your proxy and the other people close to you know that we have an article that provides information about how to enforce advance directives if needed. See How To Enforce A Living Will And Other Advance Directives

NOTE: If you do not want heroic treatment, let family members and friends who are around you often know not to call 911 if your heart stops beating or your lungs stop working or another event that could lead to death occurs. It is difficult to stop treatment once it starts.

For additional information, see:

Consider Donating Organs Or Your Body

You can make a gift of healthy organs or tissue to someone who needs them despite your health condition. You can also donate your body to science. These are known as anatomical gifts.

Making a donation of organs and/or tissue can help other people live. Giving your body will help train young doctors or advance medical knowledge.

Neither of these donations costs you or your family any money. In fact, a donation of a body can even save money because many medical institutions cover funeral expenses. If desired, a donated body can be returned to the family for burial.

NOTE: Be sure to discuss your wishes with your family. Despite signing whatever document your state requires to make an anatomical gift, it is not likely to happen if your family objects.

To learn more about anatomical gifts, see  Organ, Tissue and Body Donation 

An Option: Terminal Sedation

Terminal sedation is the use of drugs to relieve distress and pain at the end of life. Terminal sedation generally renders a person unconscious so you sleep peacefully and painlessly until death.

Terminal sedation is not euthanasia which uses drugs for the purpose of inducing death. With terminal sedation, an earlier death may be a by-product of the treatment. However, it is not the purpose.

Terminal sedation can be given in a hospital, in a hospice or at home.

Terminal sedation is legal. It is not considered suicide or assisted suicide.

If you become unconscious, the person you appoint to make medical decisions on your behalf when you are unable to make them yourself (your “health care proxy”) can ask for terminal sedation to relieve pain and discomfort. Your proxy can also decide when it is time to withdraw all life-extending treatments - including feeding and even fluids. (To learn about proxies, see Health Care Power of Attorney.

What To Do If Your Doctor Abandons You

It is not all that unusual for a doctor to stop seeing a patient when therapeutic medicine can no longer help.

If this happens to you, and you would like the continuing presence of the doctor who has helped you, ask a family member to speak with the doctor. Jane Brody, in Guide To The Great Beyond, quotes Dr. Meiier as suggesting that family members try to appeal to the doctor's human side by saying something like:

  • "My wife is very attached to you and wants to see you before she dies"  OR
  • "My husband is feeling hurt because he hasn't seen you these last weeks and time is running out."

Ms. Brody quotes one woman saying the following to her doctor when she realized her advanced cancer was no longer responding to treatment:

"I know you hoped to cure me and now you feel badly that you couldn't. And I know you did your very best to contain my illness these last months. I'm very grateful to you for that and the time it gave me. But I also want you to know that, now that we've run out of treatment options, it's very important to me that you stick with me until the end."

Alternatively, consider saying something like: 

  • "I really need you now. I need your comfort and wisdom. Please don't abandon me."
  • "I'm not saying I need you to fix anything. But I do need you to be with me throughout."

For additional information, see:

What To Do If You Choose To End Life Early

We do not recommend ending life early. However, we consider it to be our mandate to provide unbiased information about all aspects of living with breast cancer so you can make an informed choice.

If you are thinking of ending life early, consider whether it is because of depression. Depression frequently accompanies end of life. Depression can be treated. Ending life early may be a permanent solution to a temporary problem. 

  • If you want to and can end life yourself: a how-to book is available. It is called Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying by Derek Humphry. It is available in most book stores and on line.
  • Assisted Suicide is only legal in a few states in the United States and in several countries in Europe. For more information, see Assisted Suicide.
  • It is worth noting that it is common in the US for the timing of deaths to be negotiated between a patient and/or his or her family, and a doctor. Speak privately, and openly, with your doctor.

For more information about these subjects, see: