CHF-COPD
Planning for the Future| You are reading: CHF-COPD Planning for the Future |
People can live with CHF or COPD for many years, but eventually, they are fatal illnesses. Like any fatal illness, CHF or COPD causes fears and worries for people who live with it. Patients and caregivers alike have concerns and questions, and both need accurate information and ongoing support during this critical time. Your loved one's condition will change over time as the disease runs its course. Along the way, be sure to talk to your loved one and to physicians about what changes in the disease mean in terms of treatment planning and options. Be prepared to discuss changes in plans, and know that decisions can always be revisited and revised. It's wise to document your wishes in the form of an advance care plan.
Because CHF and COPD are life-limiting diseases, you and your loved one need to think about the future and make plans for what will happen as the disease progresses. It is essential that you talk about the kinds of treatment your loved one wants near the end of life, and the kinds of treatment he does not want. You might approach these discussions as "what if?" planning:
Such "what if?" planning, though uncomfortable at first, will help both of you feel more in control. As a caregiver, you are probably hesitant to burden your loved one with "What if?" questions about the future. "What if?" issues can be very difficult to raise, especially when you're trying to be positive. However, you need to work together to plan for the future.
You and your loved one will face important decisions, and it is best for everyone if these decisions can be made in advance before a medical crisis. Each person's values and beliefs should guide medical choices whenever possible, not the other way around. Such planning isn't the same as giving up. Actually, advance planning is a way for patients to control their own destinies and make things easier on family members. Though it's difficult, dealing with these issues ahead of time can bring peace of mind.
When someone is diagnosed with a serious disease, including heart failure or lung disease, our first instinct is to ask, "How much time does he have?" But the nature of these diseases makes it difficult to predict how much time a person has. Your loved one's physician is the best person to ask about prognosis. The doctor may not be able to answer this question, or at least, not very accurately. The doctor is not trying to evade the issue. But the nature of these diseases makes them very unpredictable.
Despite the uncertainty with which you live, it is important to ask the doctor about your loved one's prognosis. This should not be a one-time conversation. Instead, you should have an ongoing discussion about prognosis and about your loved one's treatment. Both prognosis and treatment plans are likely to change over time. These conversations are important during any treatment planning, especially in the presence of advanced disease. As these diseases progress, you and your family members should discuss changing treatment options and important end-of-life decisions with the medical team and with one another.
It is hard to talk about prognosis. You may be inclined to delay these conversations "for another visit." Don't! Talking about the future is easier if you address concerns at nearly every office visit. Here are a few questions to ask:
When something new arises, ask: "Does this change what I can expect?"
Expect that many doctors won't really know the answers. Ask the doctor, "How many patients with this illness have you followed to death?" If your doctor doesn't really have any experience, find someone (another doctor, a home health nurse, a hospice professional, or a support group leader) who has "been there" before.