During this phase, you need to:
Choose an advocate
The right advocate may, or may not, be your spouse or children. Consider the following in deciding who will speak for you.
- Knows you well.
- Lives near by or is easily accessible in an emergency and has time to help
- Will honor your wishes, even if they are different from his/her own
- Feels comfortable asking questions to doctors and nurses
- Maintains calm in stressful situations
- Has good people skills
- Is in good health and will most likely outlive you
- Is a willing partner and good listener
Decide What you want and don’t want
- All too often we assume our children know what we want. At the same time, they may tell the doctor they have no idea. When you are facing a terminal condition, this is the time to let your family, physician, and advocate know what your wishes are.
- In advance, it is helpful for your family and physician to know what medical treatments you want or do not want. Under what conditions do you want life support treatment? If you have no chance of being cured or returning to a life you previously had, do you want cardio-pulmonary resuscitation? Life support treatment means use of a medical device or medications to keep you alive. This may include equipment to help you breathe, food and water through IV’s or tube feedings, cardiopulmonary resuscitation (CPR), major surgery, blood transfusions, dialysis, antibiotics, and other procedures. As hard as it is to make the decisions now, it is even harder for your family or advocate to make them without your guidance, especially the decision to stop life support once it has been started.
- The American Hospice Foundation has a great article explaining the conditions and what your options are. You can find it at their website by clicking on the following link:
In general, medical conditions to be considered can be categorized by the following:
- In a coma and not expected to wake up or recover
- Permanent and severe brain damage and not expected to recover
- In a condition under which you do not wish to improve (end-stage disease either mentally or physically).
- In a condition in which meaningful recovery possible or unlikely
Decide how comfortable you want to be
Often at end- of-life, pain and agitation require medications that make you drowsy. You have the choice of being comfortable or having some discomfort as a trade off for being more alert. It is important that you think about what you want and write down and communicate your choice.
Decide where you want to be
If you ask people where they want to die, almost everyone will say they want to die at home in their sleep. Unfortunately, in fact, most people die in hospitals. There are several reasons to explain this contradiction between wishes and reality. Lack of planning and communication of one’s wishes to the people who will be making medical decisions is the most common reason. Patients who decide on hospice are more likely to die at home and have a peaceful death.
Decide who will help care for you
Planning for when you will need help is an important step in maintaining your independence. Often, a spouse may have medical problems and can not meet the physical demands of caregiving. Children have their own families and may not live nearby. Investigating assisted living communities, skilled nursing care, or in-home homemaker services in your community is a logical step. You can also choose to hire a caregiver, privately. Geriatric Case Managers are very helpful in assisting families to decide what avenues might be most appropriate in a given situation.
Jane Gross tells how hiring a geriatric case manager made a difference in caring for her mother, who was in an assisted living facility. You can read her article in the New York Times using this link: www.newoldage.blogs.nytimes.com/2008/t0/06/why-hire-a-geriatric-care-manager/
The National Association of Professional Geriatric Care Managers has great information and a tool to help you find a care manager where you or your loved one lives:
Additional information regarding caregiving can be found in the caregiver section of this website, including a tool to assess caregiver ability.