Hope

Hope is a very powerful word. Many would say it is more important than other concrete things such as health, wealth, education or status.  Quite simply, with hope the human spirit soars, takes risks, and looks forward.   Without it comes despair, apathy, and overall loss of forward movement.

In the medical world, this word gets tossed around quite a bit. Even if the word isn't explicitly used, the messages we receive in health care are enveloped with hope.  Every therapy, test, or procedure is recommended on the hope that improved health is looming. Your doctor schedules a procedure in hopes of finding the problem.   He writes a prescription because he hopes it will fix the problem.  You follow the instructions because you hope it solves the problem.

Hope is so powerful, that health care providers have come to believe that at no time should they do anything or say anything to take away patients’ hope.  They will order medicines known to be of little benefit, or order a therapy that has minimal chance of working, just to keep hope alive.  

When asked about situations of giving these types of false hope, providers will state their reasoning is to avoid having the patient just give up and die. It begs the question; do providers feel that their words and recommendations alone have the ability to lead to life or death?

It is not just health care providers that believe this; many family members think this is true as well.  “Don’t tell mom that she’s on hospice, if she knew she’d probably give up and die”

The problem with these beliefs is that it assumes that the one true hope everyone has is to avoid death.  What families, physicians, and nurses imply by providing false hope is that by acknowledging that death is looming, it will somehow speed up the process. 

This is why it is so important to find out what the person is even hoping for.  You’d be surprised to know that death isn't usually the most frightening thing. In fact, most fear things like being a burden to others, or living in chronic pain, more than they fear death.  These individuals may say they hope for a quality filled life more than life itself.

The irony is that if the medical system reflexively orders more medications and more therapies in an effort to instill hope, for someone who actually hopes for quality over quantity, the system ends up falling prey to its biggest fear, because it now is destroying that individuals hope for quality of life.

The other assumption with false hope is a belief that people aren't strong enough to handle truth. I watch patients’ transition from hope for cure to hope for no suffering as death becomes inevitable.  It is done gracefully, without a dramatic giving up.   The few that have trouble are those who have been shrouded in a layer of false hope and weren't given enough time to adjust.

Hope is powerful; it never leaves, even at the end of life. The shift from hope for life at all cost, to hope for quality usually occurs much sooner than the medical world realizes.  Someday, I sure hope we realize that. 

Caregivers

When we talk about chronic life limiting diseases, there is a group of people that usually gets left out. So much of the attention is focused on the patient, the disease, or the medications, that this supporting role is simply ignored.  It is quite possibly the hardest job anyone will ever be asked to do, yet there is no financial compensation or societal reward given for the task.  In fact 2 out of every 3 people will at some point have this unpaid job.  This job is adult caregiving.

Caregivers have an enormous task.  They provide for the needs of people who cannot do so for themselves.   It’s more than just a meal, or helping someone dress.  Caregiving for someone with a chronic disease involves sorting medications and treating symptoms. It entails sleepless nights and cleaning up accidents.

To those unfamiliar with caring for an adult, this may remind you of caring for young children.  This is much more, though.  Add to the similar tasks of childrearing the emotional toll of having your spouse’s personality change, such that they now belittle or berate you or worse, don’t know you.  Add in the discomfort and invasiveness of having to bathe or change your own parent.  Or consider the physical strain of lifting a 200lb person out of their chair, all the while worrying they may fall on you. 

We aren't through, because now, you must remember that often the caregiver is also giving up something.  They may have their own family or children that they cannot spend time with, or they may have a job they must take a leave of absence from, or even school, or trips that cannot be taken.

Unfortunately, this sacrifice is often taken for granted or overlooked, and by ignoring this important job the caregiver becomes isolated, depressed, and their personal health suffers. 

What help can we offer caregivers?  To start, if you know someone who is a caregiver, offer them a break.  This can be as simple as a going over for coffee and letting them talk about their strain or volunteering to sit with their loved one to let them get out of the house.  Affirming their workload in anyway is helpful.

If the person being cared for qualifies for hospice, this may be a consideration, as one of hospice’s main benefits is directed at relieving the stress of caregiving.  Hospice provides a nurse or an aid to come into the home for a visit, or an actual 5 day respite where the patient leaves the home to allow the caregiver a chance to rest.

The most helpful advice is also the hardest.  Caregivers must learn to ask for and actually receive help offered.  There is tremendous guilt associated with caregiving.  Caregivers think it is a failure if they need help or must move their loved one out of the home. Isn't it a greater failure, though, if your own health is permanently lost at the cost of doing it all on your own?

Finally, let me publicly say, “Caregivers, you are amazing. Hang in there. You are doing a terrific job!”