FAQ

Why do you think so many patients and their families are so unprepared to deal with death and dying?
The ways in which medical advances have transformed the nature of death and grief have taken place gradually over a period of decades. When change appears gradually in that way it often escapes “notice.” That’s what happened, and the result is that this gradual but steady change lacked a name to identify it, as well as an accurate description of what exactly it is. Lacking those pieces of the puzzle, families were left to struggle with changing realities without any organizing way to understand, much less cope with them.

What is the best way to talk with children once you receive a terminal diagnosis?
This important question warrants more than a brief response. Guidelines for talking with children about a terminally ill family member. Perhaps most importantly, we strongly recommend that family members do talk with children. We heard too many stories from people who wished they’d been given more information. Many told us that they believed they could have “handled” much more than they were told, and that a lack of information only increased their anxieties.

What should those who receive a terminal diagnosis be concerned about on the financial front?
Getting one’s financial house in order may not be the first thought that comes to mind when an individual receives a terminal diagnosis, and that is understandable. However, once the emotional dust clears, it is very important to work in this area, for two reasons: so that the terminally ill person retains as much control over their own finances as they want to, and so that the family is aware of what resources are available and how the ill loved one intends to allocate his or her resources as the process of diagnosis and treatment moves forward.

Where are the best places to find support?
Our web site includes a Resources tab that we encourage visitors to utilize. The resources it references can in turn refer readers to the increasingly available sources of information, support, and help. We also encourage visitors share with us any additional resources they would recommend.

How can caretakers best approach this process?
Whether we realize it or not, each and every one of us will most likely both find ourselves being a caretaker and needing a caretaker at some point in our lives. The best way to begin is to accept this reality and take stock of what you can and cannot see yourself doing in the event you are called on to be a caretaker. For example, could you be a source of transportation? Shopping? Child care? Second, it is vital that caretakers reach out to others so as to create a “caretaking network.”

How can caretakers balance their role with self-care?
First and foremost, embrace the idea that caretakers may also need caretaking from others as well as to take care of themselves! Too often, as they get caught up in the crisis created by terminal illness, those family members who bear the greatest burden lose sight of themselves, their other commitments, and their personal priorities and needs. This is a formula for stress and, eventually, caregiver burnout. One of the best ways to prevent this is to create a “caregiver network” as described earlier.

What advice do you have for those patients who live with constant uncertainty about their future?
“Living with death” is a phrase virtually every individual we’ve spoken with who has received a diagnosis of a terminal or potentially terminal illness can identify with. It is ultimately an unavoidable source of stress. However, it can be mitigated by reaching out to others. Nothing seems to relieve stress better than getting your thoughts and feelings off your chest. We recommend that terminally ill patients do this using any and all resources available to them: loved ones, clergy, friends, therapists, on-line chat rooms, and so on.

How can patients identify resources for negotiating medical, legal and social mazes during this process?
Our chapter on navigating the medical and social services mazes is a good place to begin. That chapter will help readers to organize their thinking and develop a plan.