Nearing End Of Life
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 .
- 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 arranges 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.
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.
- 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:
- Maintaining Control Of Medical Care If You Become Unable To Speak For Yourself
- Advance Healthcare Directives
- Health Care Power Of Attorney
- Living Wills
- Do Not Resuscitate (DNR)
- Advance Health Care Directive For Mental Health
- How To Enforce An Advance Directive
- How To Talk With Family About Your Wishes If You Become Incapacitated And Can't
- Planning ahead
- Hospice Care 101
- Medical Care
- Managing Your Medical Care.
- Health Care Facilities: How To Choose And Maximize Time In:
- How To Cope With Physical Symptoms
- Managing Your Medical Care. (Information about how to get the medical care you want)
- Doctors (including how to talk with and how to switch doctors)
- How To Deal With Bumps In The Doctor/Patient Relationship
- What To Do If Your Doctor Abandons You
- If You Choose To End Life Early
- Your Environment
- End Of Life Resources