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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.

Overview

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

Following is a brief overview of subjects to consider followed by links to additional information.

Think about what care you want or do not want

  • It helps to make the decision about what care you do or do not want if you first think about your values and what is important to you. For instance:
    • Do want continuing medical care aimed at a cure? 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, you can bring in a specialist who will provide such care. Do not be afraid of becoming addicted to pain medication. It is not common in this situation.
    • Is quality of life more important than length of life? 
    • Is it important that you keep your head clear?  
    • What are the relationships, activities or other things that are important to you?
    • Do you want to die at home instead of in a hospital?
    • Think about the costs, even if you have health insurance. According to a study from Mt. Sinai School of Medicine in 2012, 43% of Medicare patients spend more than their total assets out-of-pocket on end of life care.
  • Consider 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 that is 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 and emotional problems as they occur. (This is referred to as "not-curative medicine").
    • If money is a problem, free hospice care is available.
  • Please keep in mind that when it comes to these matters, they are solely up to you to make - or to change your mind about. There is no right or wrong when it comes to what to do when the end of life is likely to be near. 
  • If you want help thinking things through, speak with a trusted family member and/or friend and/or spiritual advisor. Also consider speaking with your doctor if he or she has time.

Help assure that your wishes will be followed in case you become unable to speak for yourself by executing free, readily available documents known as Advance Healthcare Directives (or just Advance Directives.) It is particularly useful to have a Healthcare Power of Attorney.

  • If you already have these documents, it is advisable to revisit them to be sure they express how you currently feel about these subjects. Feelings can change over time. (If you executed the documents over a year ago, if you initial and date them, it eliminates the question whether your wishes have changed.)
  • If you are in a nontraditional relationship, hospitals are not supposed to discriminate against a visitor. However, you can help assure that the person will be admitted if you appoint him or her your Proxy in a Healthcare Power Of Attorney.

Talk with your doctor.

  • It is never too early or too late to have the discussion about what you do and do not want and about his or her participation in the process. Frank discussions increase the likelihood that patients receive the end-of-life care they prefer. (They also leave survivors better able to cope with grief. 
  • Experience indicates that erring on the side of having discussions earlier is best “just in case.”
  • Do not expect your doctor to bring up the end of life subject. Not many do. 
  • If you haven't already, it is preferable to 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).
    • When you experience pain. Pain does not have to be part of your condition.  
      • If it is the case: let the doctor know that you you want to live with as little pain as possible.   If you want to know, ask your doctor about the downside, if any, for the amount and type of pain reliever s/he recommends from time-to-time. 
    • Your concerns about a fear of loss of dignity if you have them.
  • Doctors have been known to abandon patients if a point comes when there is no longer anything the doctor can do about stopping a disease's progression. It is okay to ask your doctor for assurance that he or she will not abandon you. It may help to let your 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 these discussions. 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. 

Talk with the people you think of as your family.

  • It will help assure that your wishes are adhered to if your family knows about your wishes and agrees to enforce them – or at least not oppose them.  If you become unable to communicate, they will likely be consulted no matter what you say in the documents. Even though doctors and hospitals are protected by the documents you sign, they do not want to be sued.
  • Experience indicates that it is better to have the conversation sooner rather than later “just in case.”  However, if you think your family will not agree with your wishes, at least have the discussion with the person and substitute you appoint to enforce your wishes.
    • If you do not want heroic treatment, let people 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.
  • Consider writing a letter to your loved ones about such subjects as feeling regret about the things you didn't say, or the relationships you didn't take the time to heal. A guide for creating such a letter was put together at Stanford University with the input ot patients near the end of their lives. To see the guide, click here offsite link.           

Finances

  • If you are insured: learn how to maximize use of your coverage
  • If you are uninsured, there are ways to obtain health care without breaking the bank.  If you do not qualify for Medicaid, you may be able to qualify.
  • Your situation may give rise to new potential sources of cash if needed. For example, if you have a life insurance policy, you may be able to sell it. This type of transaction is known as a Viatical Settlement.
  • 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 or writing of checks. If not, you can increase the size of your estate by making purchases or writing checks. 

Anticipate the emotions that are likely to appear. 

  • 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.
  • 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.
  • Consider joining a support 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.
  • 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.
  • NOTE: Music may be comforting. Toward the end, Chalice Of Repose  offsite linkarranges for a person to play peaceful music for people close to death (for example, on a harp). Alternatively, a local hospice or disease specific nonprofit organization may be able to make arrangements for peaceful, emotionally healing, music.

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.
  • Focus 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."  
  • 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
  • Do what you can about checking off items on your bucket list if you have one. 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.
  • 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.

Leaving early

If you want to leave the planet before nature takes its course, speak with your doctor off the record.  Studies indicate that when it is near, 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.

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. Even if you think your estate is so small that you don’t need a will, it is still advisable to have one.
  • If you have already made a Will and other plans, it is advisable to 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.
    • Thanks to the internet, you can also leave messages, in video or print format, for loved ones, and even have messages mailed at pre-arranged times. For example, click here.
  • Consider donating your eyes or other organns to medical research.
  • If you are a business owner, in addition to succession planning, see Estate Planning For Business Owners. Consider writing a Business Ethical Will

Ethical Wills And Messages

Consider putting together an Ethical Will which passes on to your heirs information you think 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.  

For additional information, see:

End Of Life Stages

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.  

How To Cope With Physical Symptoms

Each of the following symptoms may show up. They are all treatable and can be controlled. They can possibly even be eliminated.

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.
  • For information, see: Hair Loss From Treatment And How To Deal With It

If you want make up tips, click here

How To Cope With Financial Issues: An Overview

If you are insured: Your health insurance will continue to cover medical treatments so long as they are medically necessary. Most coverage includes palliative care -- the relief of pain and other symptoms.

If you are uninsured, there are techniques for obtaining the care you need (see the Survivorship A to Z document in "To Learn More"). 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).

If you have a money crunch, we provide 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.

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. 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.

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.

For additional information, see:

How To Make Your Space 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.
  • Create section on a computer or mobile device showing videos of your family and friends or a loop of photos.
  • 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 Choose To End Life Early

If you are at an end stage and are thinking of ending life early, consider whether it is because of depression. Depression frequently accompanies end of life. To quote Sally Fisher: "Terminating life can be a permanent solution to a temporary problem." To help determine whether you do have depression, and, if so, what you can do about it, click here

Still, if you want to end life early, consider the following

On your own: 

  • Stopping eating and drinking is a legal way to hasten death, usually within two weeks. Reports indicate this method is pain free. Voluntarily stopping eating and drinking is referred to as  V.S.E.D. in medical circles. To learn about V.S.E.D, see: the article by Compassion & Choices: https://compassionandchoices.org/end-of-life-planning/learn/vsed/ offsite link
    • Congress has enacted the Patient Self Determination Act which legalizes  V.S.E.D. in every state
    • The Supreme Court has ruled that a person has a right to refuse medical intervention.
  • An easy to understand how-to book for ending your own life is called Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying by Derek Humphry. The book is available through such online booksellers as Barnes and Noble offsite link or Amazon offsite link.

With the help of others:

  • Assisted Suicide is legal in a batch of 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 U.S. 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.

For related information, see:

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 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."

For more information, see:

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.  See: What To Discuss With A Healthcare Proxy  
    • 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.

For more information, see:

End Of Life Resources

Information for the Patient

Information for Caregivers