When people go to hospice, it is often a complicated journey there. Unfortunately, many doctors wait until much to late to discuss end-of-life issues with their patients. It's also unfortunate, though, that many people don't discuss end-of-life issues with their families. It's best to let your family know what you want done at the end of your life. Many health care workers recommend you have these conversations long before you are ever diagnosed with a serious or terminal illness. While I see the validity of this, I also understand why many wait until the diagnosis to make these decisions. There are pros and cons to this.
Pros
- Your choices may change once you are diagnosed.
- You may originally say you want everything done, but once you know how terminal the illness really is, you may decide you just want to be comfortable.
or
- You may say you don't want anything done, then find out the disease has a high cure rate, so you change your mind and decide to try. (Often people will have CPR and be vented once and decide after that they no longer want those as an option.)
- You may not be fully educated about your options (CPR, meds, intubation, etc.) and therefore can't make a valid decision until this is brought up to you.
Cons
- You never know when you'll be in a life-altering accident that may cause you to be unable to share your wishes with the medical staff.
- At diagnosis of a serious illness, it is best to face it with a positive outlook if you expect positive outcomes. Focusing on end-of-life decisions at that time often cause you to have a poor outlook, because you are forced to think of the "What if.."'s.
- If your illness causes you to be unable to make decisions, you don't know that your family will make the same choices you would want.
There are many more pros and cons, but these are very basic and cover what I see frequently. What I also frequently see is family members (children, spouses) not able to cope with the end of their loved one's life and therefore will go against the patient's wishes and decide to make them a full code/full treatment. This is something I ethically do not agree with. I think it is the job of every health care team member to make sure family and patient are on the same page with what the patient wants. If this means the family needs help to cope, so be it. Most hospitals offer that. Chaplain services, the number one go-to person when people need help coping, are for both the patient and their family. I enjoy working at a facility that has so many chaplains that we can really lean on this for the betterment of our patients.
What is Hospice?
In my eyes, hospice is where someone goes to die peacefully. Hospice allows people to stop treatment (chemo, radiation, hefty antibiotics with ill side effects) and instead be given medications to help make them comfortable. They can eat and drink whatever they want. If they hurt, they are given pain medicine. If they are anxious, they are given anxiety medicine. If they are struggling to breathe, they are not forced to breathe, instead they are given medicine to make it easier to breathe (decrease work of breathing). It is a respectable death. It's not ugly. It's usually not sad. It is expected. It is patient-centered. It allows for family support. If a patient is being treated at home, family can still take vacations or breaks from the heavy work. They can take the patient to a hospital or hospice center (whichever the hospice service advises them to do) and the patient will be left for respite care - which means they receive the same care but the family is able to take a break. It may sound harsh to say the family needs a break while their family member is dying, but this is work that is very emotional and takes a toll on families. They aren't used to this. They aren't used to seeing people die. This is their loved one. They often even need encouraged to take the break. Hospice is about comfort, respect, and dignity.
