The Good News And The Bad News About Hospice

The good news is that I was just in Scottsbluff, Nebraska and their hospice program is doing such a great job of providing people with the option of a good death that 46% of their dying patients are dying with the help of hospice. Amazing. Nationwide the average is 33%-38% with some states as low as 14%. I am even more impressed with what is happening in Nebraska since they are covering 9000 square miles. I know local hospices in Los Angeles that are struggling to cover their few hundred square miles. Usually those who live in rural communities are limited by the minimal medical services that are available. Nebraska has found a way to move beyond those limitations and to get people what they need. I congratulate the hospice workers of Nebraska.

The bad news is that not every hospice is the same. I was told about a hospice in another state that was providing terrible care. They weren’t using universal precautions to prevent infections from spreading to other family members, were putting the patient at risk when transferring the disabled patient and were not calling the family back when they called to complain. Like any industry, there are good and bad hospices and good and bad employees. If you are on hospice and you don’t think you are getting the care you need or they are not being respectful and responsive, change hospice providers. The bad hospice I just mentioned tells people that they can’t change their hospice provider for 90 days. That is a lie. You can change any healthcare provider any day. You are never locked in.

There are many types of hospices. There are inpatient hospices which are part of hospitals, inpatient hospices that are in their own building, for profit hospices, not for profit hospices and volunteer hospices. Any of these can provide good, loving care and most do everyday. It is not the type of hospice but the people running it and working in it that makes the difference.

How Can the Doctor Ask Me to Kill My Mom?

The doctor just told you that you have difficult decisions to make. She said that you have to decide if it is time to let your mom die. Do you want us to take your mom off the ventilator? Would your mom want CPR? How can you decide? Well I have a gift for you. It is not your decision. It is your loved one’s decision. You are just the representative of the patient and are supposed to be speaking as if you were the patient themselves. You are supposed to use the values of the patient, not your values.

Here is where your mom’s doctor went wrong. The doctor should have asked, “What would your loved one be telling us if they were able to speak right now? What would your mom say about wanting CPR? Would your mom want to continue on like this? These are the right questions. But instead the doctor burdens us by making it seem like it is our choice. But it shouldn’t be our choice. We are the surrogate decision maker, the substitute just filling in for the patient. Different states call it different things: durable power of attorney, agent, proxy or surrogate. But no matter what we call it, the rules are the same. You are supposed to honor the patient’s wishes,

I know the doctors never told you this before. But let me explain how it works, it is something called the substituted judgment standard. We are supposed to speak with the voice of the patient. As the decision maker, you are supposed to think about everything you know about the patient, what they have told you in the past, what their values are and what is important to them. Then using this information, do your best to make the decision you think they would make.

What if after considering all of this, you realize your mom would say, “I don’t want to live like this, I would rather die.” Then you have to tell the doctor the truth. I can hear you saying, “But I don’t want her to die.” Of course you don’t. But you have a job to do and it is up to you to be brave. You need to do the respectful and loving thing and tell the doctor what she would say even if it is not what you would choose yourself. This is the gift you can give your loved one by speaking for them one more time. Otherwise you are betraying your loved one and disrespecting their beliefs and their life. I am not saying this is easy to do, but it is the right thing to do. And usually doing the right thing is doing the hardest thing.

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