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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.

Colon/Rectal Cancer: Nearing End Of Life

Summary

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. Please do not take this to mean that we suggest you give up hope. No matter how certain things seem, you can still have joy in your life. There is always reason to hope. 

Your choice

Just as you have control over how you live, you also have the ability to control the last period of your life.

As a practical matter, it is your choice whether to keep trying to eliminate your disease, to let go and seek the fullest life available in your circumstances, 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: whether on your own, in consultation with family and friends, your clergyman, and/or in consultation with your medical team. Ultimately, we are talking about your life. The final decision is yours.

What care you want

Even at an end stage, you are entitled to good medical care and attention from your health care team.  

Part of your decision is what medical care you do or do not want.  Take the time to sort through what is important to you now. Think about your values and what is important to you. For instance, is quality of life more important then length of life? Is it important that you keep your head clear?  What are the important relationships, activities or other things that are important to you?

Once you know what you want, be assertive. Speak up.

You can assure your desires will be satisfied if you become unable to speak for yourself by executing the legal documents generally known as Advance Directives.  They are easy to complete and are free.  

Peace of mind comes with taking care of the legal documents and discussions that accompany them to assure that your wishes control - even if you become physically or mentally unable to speak for yourself.  

Whatever you decide, you can change your mind as often as you desire. 

NOTE: The sooner you tell your doctor(s) about your priorities, the better.

Continuing medical care

If you want continuing medical care, in addition to providing treatment, your doctor can help control both physical and emotional symptoms. If your doctor isn't aggressive about reducing or eliminating pain, bring in a doctor who will provide such care.

Do not fear becoming addicted to pain medication. It is not common in this situation. To learn how to get the medical care you need, see Managing Your Medical Care.

Your environment

Think about how the space in which you spend these days looks, sounds and smells. This is an opportunity to create the space you've dreamed of.

Leaving early

If you want to leave the planet before nature takes its course, look at the symptoms of depression to see if you are depressed. Death is a permanent solution to what could be a temporary condition.  Also speak with your doctor. Unless you live in a state which permits assisted suicide, he or she cannot help to that extent, but he or she may be able to help in other ways.. As an alternative, while we do not recommend it, there is also the possibility of assisted suicide abroad and ending your own life.

Planning Ahead

If you haven't already, it is wise to get your affairs in order now. At the least, everyone should have a Will.

If you have made plans, review them to be sure they reflect your current wishes and financial situation.

If you want to save your heirs unnecessary expense and stress, consider pre-planning your funeral. Pre-planning is different than pre-paying.

Ethical Will


Consider putting together a document known as an Ethical Will. It passes on 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.  

Visitation from a Partner

If you are part of an unmarried couple (heterosexual or homosexual), take steps now to assure your partner will be able to visit if you end up in a healthcare facility. While hospitals can no longer bar people because of their relationship or non-relationship to the patient, be sure your doctor and health care facility know who you want to be permitted to visit. 

For additional information, click on the following links: 

NOTE: Partnership For Caring provides legal counseling and information on end-of-life decisions. Tel.: 800-658-8898, Spanish helpline: 877-658-8896, 202-296-8071 
Website: http://www.caringinfo.org offsite linkE-mail: caringinfo at nhpco dot org

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

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. 

Even after you are no longer able to speak for yourself, you can stay in control if you execute a Health Care Power of Attorney or other Advance Directives ahead of time. (If you have already executed these documents, revisit them to be sure they reflect how you still feel. If you had a discussion with your Proxy about your wishes, have another one to reconfirm your current thoughts).

Even the most aggressive person 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. 

If you haven't before, and if there are not further standard treatments to treat your condition, consider 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.

It is also 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.

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.

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. See Survivorship A to Z's document in "To Learn More" to learn how.

Spend time with people who are important to you. 

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.

To Learn More

More Information

Travel 101 Spirituality Hope

How To Get Your Affairs In Order

Wills are important for everyone. Your health status makes it more urgent that you write one now. Wills are not expensive. You can even write one yourself.
 If your Executor 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. 

If you are a business owner or self employed, consider who succeeds you and what information will be needed.

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.

  • Check beneficiary designations on your life insurance and retirement plans to be sure they go to the people you want. Unless the documents list your estate as beneficiary, these funds are not controlled by what your Will says.
  • Make arrangements for the personal items you care about to go to the people you want to have them.
  • 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.
  • Make peace with people you care about - if not for them, for own peace of mind.

It may be difficult to think about, but it is also advisable to preplan your funeral. 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 vulnerable.




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, the treatments you do and do not want, and his or her participation in the process. Also, if you haven't already, tell the doctor what you do or do not want to know about the progress of your disease and his or her estimate of how long you are likely to live (prognosis).

It will make it easier for family and friends if you let the doctor know that you understand that the drugs that may provide relief from unyielding suffering before death may also hasten death - but that you want to live with a little pain as possible.

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

It is okay to ask your doctor for assurance that he or she will not 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 your doctors know that just their 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. 

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. 

NOTE: 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 about the pain you are experiencing 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. 

Survivorship A to Z has created a Symptoms Diary which helps you keep track of pain (and other symptoms). You can print it and show it to your doctor instead of trying to remember what happened since your last visit. See "To Learn More."




How To Cope With Emotional Issues

Dr. Elizabeth Kubler-Ross defined the five emotional stages to 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 more than one of these emotions 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 (such as breaking inexpensive plates) instead of taking it out on the people closest to you or the medical staff.  
  • 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 with discussion with a mental health provider.  
  • Acceptance
    • Acceptance that life is going to end and becoming peaceful about it.  

It is recommended that you 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. 
  • It may be helpful to remind people that talking about something doesn't make it happen - just as not talking about it doesn't 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.

It is common to look for meaning in life when it appears as if it will end. Meaning helps provide sense to what is happening.

There is no one size-fits-all coping mechanism. Rather, experience shows that the best coping mechanism is whatever helped you get through other crises in your life.

If you need assistance with coping or finding meaning, consider the following:

  • Psychiatrists, psychologists and social workers can help - particularly people experienced in end-of-life issues.
  • Priests, rabbis, inmans and other religious and spiritual teachers can provide counseling, solace, and help with meaning.

For additional information, 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 for people close to death (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.

How To Cope With Physical Issues

Each of the following symptoms may show up. They are all treatable and can be controlled. They can possibly even be eliminated. For information, click on the particular symptom:

If you lose weight, your clothes can be tailored to fit. If money is an issue, you can purchase clothes at a second hand or thrift store. 

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 have hair loss, wigs are available for free if necessary.

If you want make up tips, call the American Cancer Society and ask about the "Look Good, Feel Good" program at 800.395.5665 for a self help kit. You can call 24 hours a day. 

How To Cope With Financial Issues

FOR INFORMATION ABOUT EACH OF THE FOLLOWING SUBJECTS, SEE THE DOCUMENTS IN "TO LEARN MORE."

If you are insured:

  • Your health insurance will continue to cover medical treatments so long as they are medically necessary.
  • Most health insurance includes the relief of pain and other symptoms. This is known as palliative care. Palliative care is generally covered even if you decide to stop treating the basic disease.
  • Maximizing use of your health insurance policy will minimize your out-of-pocket expenses.  To learn how to maximize your health insurance, click here;  Medicaid, click here, Medicare Part D, click here.
  • Financial assistance may be available if needed to pay for premiums, co-insurance or co-pays. For information, click here

If you are uninsured:

  • Use the information in our document about Uninsured to minimize the cost of treatment.
  • Financial assistance may be available. For information, click here
  • You can still buy health insurance. (To learn more, click here
  • Veterans qualify for veterans health coverage. (Click here) 
  • You may be able to qualify for Medicaid (Medi-cal in California.) For information about Medicaid, click here. For information about transferring income or assets to qualify for Medicaid, click here.  
  • There are techniques for obtaining the care you need (see the Survivorship A to Z "Uninsured”) while attempting to minimize cost. 
  • Financial assistance may be available. For information, click here
  • Veterans qualify for veterans health coverage. (Click here
  • If you have limited income and resources in addition to a house and car, you may qualify for Medicaid or be able to qualify for Medicaid (Medi-cal in California. For information about Medicaid, click here.  For information about transferring income or assets to qualify for Medicaid, click here.  

If you have a money crunch:

  • Survivorship A to Z provides comprehensive information for 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 such as the sale of a life insurance policy as a Viatical Settlement or a Life Settlement. (For more information, click here and here respectively.)
  • 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 credit cards with a death benefit:

  • You can increase the amount you leave your heirs by only paying the minimums due each month, and by charging or writing checks on the accounts to pay your medical costs and other items.
  • Without commenting on the morality of the situation, 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 the car company. When he died, his wife received the car free and clear thanks to a combination of the death benefit on his credit card and the credit life insurance.

If you decide to stop treatment and instead move to Hospice care, insurance covers that as well. Hospice care is provided on a sliding scale basis or for free.

NOTE:

  • It’s easy to ignore filing taxes at a time like this, but it is preferable not to. If you don’t have time or the inclination to prepare a full tax return, at least pay an estimate of the tax and file for an extension of the time required to file a return. These steps will save your estate unnecessary expense in the form of penalties which otherwise go to the government  instead of your heirs.
  • It is recommended that you preplan (not pre-pay) your funeral. It will save your estate money and avoid undue stress on your heirs at an already stressful time. (To learn more, click here. If you decide to preplan your funeral, financial assistance is available to help with funerals. Click here

Nutrition

Nourishment is necessary for life.

When a health condition causes the end of life to be near, patients often have no appetite and may lose a lot of weight. The cause is likely the condition itself and cannot be controlled. If you do not feel like eating, it is not advisable to force yourself to eat. The body cannot use the food or fluid. Continuing to eat may only make you uncomfortable.

You can obtain nutrients through drinks such as Ensure or through intravenous feeding.

Usually care related to hydration and nutrition in the final weeks of life includes treating dry mouth and thirst.  (For information about dealing with dry mouth, click here.) 

It is helpful to them to explain to your family and immediate circle why you are limiting food and liquid intake. If you have difficulty with the discussion, ask your doctor or a person on his or her staff, or a person close to you to do it for you.

If you have a question, speak with your nurse or doctor.

For additional information, see the documents in "To Learn More."

If You Have A Death Benefit On Your Credit Card

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

Check to see if there is a restriction about the timing of new purchases. You can generally purchase something right up to the moment of death and it will be paid for by the death benefit.

Check to see whether there are any restrictions about checks you write on the account. If not, you can transfer debt to the credit card by writing a check on the account to the person or company to whom you owe money. 

For additional information, see the documents in "To Learn More."




Hospice Care

Hospice care is a way of caring for people with a life-limiting progressive illness or for people who are dying. It involves shifting the focus from trying to cure a disease to care that provides comfort and the best quality of living for the time you have left.

Hospice care is a multi-disciplinary approach that provides medical, emotional and spiritual care for the patient and for the family.

Although hospice care does not provide treatment to cure the disease, it does treat physical problems as they occur. (This is referred to as "not-curative medicine").

If money is a problem, free hospice care is available.

For additional information, see the documents in "To Learn More."




How To Keep Control When You Cannot Speak

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

  • Execute a Health Care Power Of Attorney and/or other Advance Healthcare Directives so your wishes can be known and carried out. 
    • Include authority to make decisions in case you lose your mental capacity. (To learn more, see the Survivorship A to Z document about Advance Directives for Mental Health.)
    • If you already have these documents, revisit them to be sure they express how you currently feel about these subjects. Feelings can change over time.
  • Get your doctor on board. You will need his or her cooperation.
    • 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. If you already had the discussion, remind the doctor of your wishes. For example, 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 does not agree with your choices, and does not convince you to change your point of view, will he or she nonetheless carry out your wishes? If not, consider changing 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 documents and discussed with your doctor. Even though doctors and hospitals are protected by the documents you sign, they do not want to be sued.

For additional information, see the documents in "To Learn More."

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 happens that could lead to death. It is difficult to stop treatment once it starts.

Make Where You Live Comfortable

Think about what changes in your environment would make you feel most at ease. Include:

  • What it looks like
  • How it sounds
  • How it smells

Do what you can to make the necessary changes.

For example:

  • Surround yourself with photos of family, friends and happy memories.
  • Ask friends to close in a porch so you can sit indoors in the sun in the winter.
  • Change the smell of your surroundings by putting out bowls of potpourri or dab essential oils on light bulbs.
  • Change the color of the walls and/or bedding.
  • Sounds, such as waves, can play in continuous loops.

You can get help making the changes from:

  • Family and friends
  • Religious and fraternal organizations to which you may belong
  • Non profit organizations such as Dream Foundation, see: www.DreamFoundation.org offsite link

If You Are Likely To Be Hospitalized

If you are likely to be hospitalized, your doctor can tell you whether a particular hospital will honor your wishes, particularly about medical care that you do not want. If one hospital won't follow your wishes, there is likely to be a nearby hospital that will. 

If the medical care is much better at a hospital that won't 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. 
    • Discuss with the person you appoint 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 hospital to another if the first hospital won't comply with your wishes.
    • Execute other Advance 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 hospital for medical care, but that if it comes to that, you want to be transferred to a hospital 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 hospital, as well as whatever other Advance Directives you execute. Ask your health care proxy to read our document about enforcing living wills. 

For additional information, see the documents in "To Learn More."

Donating Organs Or Your Body

You can make a gift of healthy organs or tissue despite your health condition. You can also donate your body to science.

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. 

To learn more about anatomical gifts, click  here. 




If You Have A Partner Instead of A Spouse

Whether your partner is of the opposite sex or of the same sex, hospitals and other health care facilities which accept Medicare and Medicaid (which is just about all hospitals) are no longer allowed to treat the person differently than a spouse. 

As a general matter, hospitals have a right to determine visitation. Patients do not have a right to be visited. However, if visiting is permitted, the patient is the person who now chooses who can visit. 

NOTE: If a person is having difficulty with the health care facility, appoint him or her as 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." 

If the question becomes enforcing your wishes, read the document noted in "To Learn More."




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 advance 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."

If You Choose To End Life Early

Survivorship A to Z does not recommend ending life early. However, we do consider it to be our mandate to provide unbiased information 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. To help determine whether you do have depression, and, if so, what you can do about it, click here

Ending life early may be a permanent solution to a temporary problem.

Still, if you want to end life early:

  • Stopping eating and drinking is a legal way to hasten death, usually within two weeks. In a survey of hospice nurses in Oregon offsite link, published in The New England Journal of Medicine in 2003, respondents reported that most of their terminally ill patients who had deliberately refused food and fluids had “a good death,” with low levels of pain or suffering.(Voluntarily stopping eating and drinking is called V.S.E.D. for shorthand in medical circles).  The Supreme Court has ruled that a person can refuse medical intervention, and Congress has acted with the Patient Self Determination Act.  V.S.E.D. is legal in every state
  • An easy to understand how-to book is available called Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying by Derek Humphry. If your local bookstores doesn't carry the book, it is available through such online booksellers as Barnes and Noble offsite link or Amazon offsite link.
  • Assisted Suicide is legal in a few states in the United States. Assisted suicide is also legal in several countries in Europe. To learn more, click here.
  • 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. If you are going to discuss the issue with your doctor, the doctor may feel more comfortable with the discussion if the meeting is one-on-one. If there is any question about your mental competence, consider adding the family member or friend that the doctor thinks of as someone with your welfare in mind who is competent to make decisions.