Managing the rest of my life has been so hard. "Numbing exhaustion" is a constant state for me -- emotionally and physically. I feel like I can't even process and grieve because I need to keep going and doing the next thing and there is always some sort of crisis. I work full time as an editor for a monthly magazine and can hardly focus on work, plus I am constantly on the phone with doctors and taking my dad to appointments. I've been married for three years and this situation has put so much strain on my relationship with my husband in so many ways.
--Maggie, whose father has been battling cancer for two years.
Today, thanks to several decades of remarkable medical advances, stories like the above have become the rule rather than the exception they once were. The realities of death and dying have changed profoundly in a relatively short period of time. Life expectancy in countries like ours continues to grow as modern medicine, in its war on deaths, is getting better and better at converting diagnoses such as cancer, that once were associated with a relatively quick death, into something akin to chronic illnesses. And because of this the nature of grief has changed.
For better or worse, this change represents a situation that virtually every one of us will find ourselves in sooner or later. The crisis begins when we learn that a loved one has been diagnosed with an illness that is terminal or life-threatening. But this only marks the beginning of a journey -- one that may last months or years, and which has the potential to affect just about every aspect of our lives and our relationships.
Here are a few statistics that illustrate just how much things have changed:
One profound result of all of this is that death has become less and less a sudden and unexpected event and more and more a prolonged process that begins with a diagnosis, proceeds through a period of treatment (or treatments), and may end eventually in death. This process means that both the terminally-ill individual and the family are increasingly confronted with the need to "live with death" for a prolonged period of time.
Challenges in the 21st Century
The changing nature of terminal illness has created some unique challenges for both patients and their loved ones. These typically did not arise when death came quickly, and when "terminal" meant "imminent." Patients and their loved ones alike are often not prepared for these. In our book, Saying Goodbye: A Guide to Coping with a Loved One's Terminal Illness, we offer them some specific suggestions, as follows:
Meet the Payers
Most individuals do not read the fine print in their health insurance plans and are unaware of the definitive list of covered services. Rather, what most people focus on when deciding what insurance plan to sign up with are the overall cost of the plan and the out-of-pocket cost of co-pays for office visits and prescription medications. Many people falsely believe that all health insurance plans cover the same range of services.
Health insurers do publish the list of services and procedures each of their plans cover, as well as how much they will pay (vs. how much the patient is expected to pay) for each. They also provide the list of health care providers who participate in their various plans, plus the ground rules for utilizing specialists, for contesting denied benefits and so on. This information is available in most cases through the Internet, by visiting the health insurer's web site.
It is very important and helpful if one (and preferably more than one) family members take responsibility for gathering information such as the following:
This team of family members need to become expert in this material. As time goes on this information will play an increasingly significant role in the decision-making process.
Facilitate and Coordinate Communication
Today, when a person is diagnosed with a terminal illness there will not be just one but many medical personnel involved in the treatment. How many and what kind of medical specialists will be involved depends in part on the complexity of the diagnosis and how the disease progresses. Typically, several specialists will be involved.
We recommend that the family consciously think in terms of a chain-of-command for decision-making purposes. Ultimately it is the patient -- in this case, the terminally-ill family member -- who sits at the head of this chain. He or she, however, will also have one of more confidantes (a spouse, an adult child, a parent, etc.) whose opinions will weigh heavily in any decisions that are made. All families develop their own chains of command. This organization can be altered, for example if it is the head of the family who is the one who receives a terminal diagnosis. There is no reason why all those family members who are truly invested can't be included somewhere in this organizational scheme, for example by being asked to become expert in the patient's health insurance plan, researching alternative treatments or identifying specialists who can be consulted.
Another important consideration is managing the interactions of the various specialists: oncologist, surgeon, radiologist and other health care providers. Which of these individuals is in charge -- the person who the patient trusts the most and who will have the final word when it comes to determining medical treatment? On what, if any, issues do the doctors disagree when it comes to the best course of action? If more than one specialist is consulted and interviewed for a specific procedure, who will go with the patient to these meetings and what questions will be asked? Write these questions down and bring them with you. Most importantly, do NOT assume that specialists will communicate with one another. Therefore, the family needs to be prepared to facilitate this communication.
A Long and Winding Road
The challenges that families must face when confronted with a terminal diagnosis of a loved one are complex. They include evolving new structures and dynamics as the person they love slowly slips away. It means learning how to cope with setbacks and deterioration, as well as periods of seeming remission. It means dealing with the complexities of extended grief, which can wear individuals down and lead at times to ambivalence about the wisdom of extending life. It means talking with a dying loved one about mortality and other issues that do not arise when death strikes suddenly and unexpectedly. It means learning to make space for extended grief in lifestyles that are busier than those of earlier generations.
If there is a lesson to be learned from these changes in the nature of dying and grief, it is that patients and their families alike typically feel more (not less) empowered, and less (not more) stressed if they can escape the profound and lingering sense of loss of control that comes with a terminal diagnosis. Rather than feeling depressed after reading about what to expect, and what steps to take, our readers have said they feel more at ease, and more prepared for whatever might lie ahead.
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