Hospice or not? What an agonizing decision! In order to choose hospice, a patient has to be willing to renounce all "curative" medical care for his terminal illness.
What does this mean exactly? Understandably, many people find it rather confusing. When a person is terminally ill, what sort of "curative" care could there be for him to renounce?
What Ever Happened to Sustaining Medical Care?
We nowadays speak very often about the choice between "curative" and "palliative" care, as if all medical care fell into one of these two categories. Actually, there is a third very critically important category — "sustaining" medical care.
I will give definitions of these three kinds of medical care and some examples for each.
Curative care is when your disease is conquered. Not only do your visible symptoms go away, but you no longer have an underlying medical condition that will produce more trouble for you in the future. For example, a cancer patient has surgery that completely removes his tumor and it never comes back.
Palliative care attends to only the symptoms but not the underlying medical condition; for example, the patient is given pain medications. His tumor is still there and still growing and still threatening his life, but he no longer is in pain.
Sustaining care is when the underlying medical problem still exists, but with monitoring and treatment, the threat to the integrity of your body is being controlled.
Here are examples of "sustaining" medical care:
A patient with lung disease is having trouble breathing. He is brought to the hospital, where the excess mucus is removed from his lungs. Now he can breathe again.
A patient has a stroke which affects his ability to swallow. He is given a feeding tube to sustain his life. He can now participate in rehabilitation.
Sustaining medical care is very successful in prolonging life and the quality of life. Neither of these "sustaining" medical interventions were "curative." Both patients still have their diseases, but now they are breathing and are able to be nourished.
If these patients elected to have only "palliative" care in hospice and had developed these same symptoms, they might not have been taken to the hospital. They might have, instead, been sedated to keep them from experiencing discomfort. This collapse might well have been their final collapse.
The Fearful Decision
In recent decades, physicians have been schooled in the idea that patients have a right to know when their condition is such that they can no longer expect to be cured of their diseases. They have also been taught that the patient has the right to decide when he wishes to stop treatment, for whatever reason.
So when a physician tells a patient that he may be eligible for hospice, it may mean that he cannot be cured, but it does not necessarily mean that the physician thinks that the patient cannot be sustained! The physician may simply be informing the patient that his disease is something that isn't going to disappear and that, if he doesn't engage in sustaining treatment, he would be dying, so he is eligible for the Medicare hospice benefit. He can drop out of sustaining treatment and use the Medicare hospice benefit if he wishes. This is like telling a high school student that he has reached the age where he is legally able to drop out of school. It doesn't mean that it is a good idea!
There is a lot of room here for misunderstanding. The doctor may think, because the patient appears discouraged, that he would not be interested in sustaining care. The patient may think, because the doctor mentioned hospice, that sustaining care is not possible.
Another confusing matter is that, even if the patient understands the concept of sustaining care, it is still hard for him to know whether, if he chooses hospice, there will be any sustaining care given along with his palliative care or not!
Although, in the hospice of yesteryear, sustaining the patient was part of the protocol, today, this may not be the case. In some hospices, "sustaining" care is considered "curative" — and therefore not included — because it is "life-prolonging." In some hospices, the exclusive focus upon "palliative" care can be very extreme.
So, on the one hand, the patient hears that, if he goes to hospice, he will be able to stay at home, and experts will manage his pain and symptoms. But, on the other hand, he fears that when he gives up "curative" care, he may be giving up something important and he may die sooner in hospice.
Who Can Help a Prospective Hospice Patient Find Out the Truth?
A patient who is deciding whether to enter hospice and who wishes to understand his own risk has to sit down with his trusted, curative physician, hopefully one who shares his religious values, and make a list of all of the curative and sustaining treatments that he is using now and all of those that he is likely to need in the future and ask this doctor to explain to him what will happen to him if he gives up each one of them.
