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Nearing End Of Life

Summary

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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

  • 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). Also let him or her know about our article: How To Enforce A Living Will And Other Advance Directives  
  • 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.  
  • Ultimately, we are talking about your life. The final decision is yours.
  • If you choose to stop receiving medical care aimed at curing you, you can always change your mind and start treatments again.

Think about what care you want or do not 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. 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?
    • 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-pocketon end of life care.
  • The way to assure your desires will be satisfied is to execute the legal documents generally known as Advance Directives. Advance Directives allow you to keep control of your medical care even if you become unable to communicate.  (To learn about Advance Directives, click here.
  • It is also important to have a discussion with your family. There are all the obvious reasons for speaking about your desires with the people closest to you. In addition, if you become unable to speak for yourself, they could legally try to force additional medical care that you may not want. For information about how to talk with your family about end of life, click here.
  • Thinking about what could happen is not giving up. Writing legal documents about events that could happen is not going to make them happen. The documents and discussions that accompany them just make it more likely that you will get the care you want and that you won't receive the treatments you don't want. Merely executing the documents can bring peace of mind.
  • Whatever you decide, you can change your mind as often as you desire. 

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 be afraid of 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.

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 more about hospice care, click here.

A discussion with your doctor

  • 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. 

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.
  • 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."  To learn about hope, click here.
  • 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. Tp learn how, click here
  • 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.

Your enviornment

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, 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. For more information, click here.

Planning Ahead

  • If you haven't already, it is wise to get your affairs in order now. (To learn the basics of estate planning, click here).  At the least, everyone should have a Will. (To learn about wills, inluding how to make one challenge proof, click here.) 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. For information about funeral planning, click here.
  • 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 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.  (To learn about Ethical Wills, click here.)

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.

For additional information, see:

NOTE: Visitation from a Partner  If you are part of an unmarried couple (heterosexual or homosexual), hospitals can no longer discriminate against them visiting. Still, you can assure your partner will be able to visit if you end up in a healthcare facility by naming him or her as your health care Proxy in your Health Care Power of Attorney. Unless you take such steps, although he or she may be barred from visiting you as "non-fmaily" even though such restrictions are now prohibited. 

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