Insert Mom, Dad, Brother, Sister, Friend…….whatever you usually say when you tell someone that hospice killed someone that you knew or loved. It is not true. Before I prove it, let me say that I am so sorry that you lost someone that you loved or cared for. To date, I have lost four family members, all cared for by hospice providers as they declined….. I know it hurts. More than that, I am sorry that the hospice provider did such a poor job of preparing you, helping you know what to expect and educating you so that you weren’t left feeling this way. It must take a lot of energy to stay stuck in a grieving process by blame, anger and maybe even guilt.
Hospice does not kill (euthanize, intentionally or accidentally overdose, hasten or help death to occur) patients. Period. Here is the truth….
- Persons who die while on hospice were receiving end of life care BECAUSE THEY ARE GOING TO DIE REGARDLESS. They have an illness that has reached end stage. This means their condition is terminal and their prognosis (predictable outcome) is terminal. Otherwise, they would not qualify to use their hospice benefit. They have exhausted all possible treatments OR they have decided not to try any more treatments for a variety of reasons OR their bodies cannot tolerate treatment anymore. By choosing to receive hospice services, they have NOT CHANGED THEIR PROGNOSIS. They are still going to die, but they have decided that they want to be comfortable. They want to have their symptoms controlled. They want to choose where they will receive care as they decline and decide who will make decisions for them when they become incapacitated. They want to make sure there is a support system in place for their loved ones and that they don’t place a financial burden on them. It does not mean they WANT TO DIE. It means they know that they are going to die and they want to do it on their own terms as much as possible. (Different states have differing limiting the “terms” options).
- Hospice is about life-QUALITY OF LIFE. There is a difference between being alive and living. Hospice providers want patients to be as alive as possible and to live as comfortably as possible. It is incredibly important for a person with a terminal prognosis to still have control over decisions that directly impact them (if they are capable and competent to make those decisions or if they have appointed an agent as medical power of attorney to speak for them when they cannot speak for themselves). On hospice, patients choose when they need another dose of pain medication (within safe paramenters and from a variety of options) or if they feel good enough to go to lunch with family members (hospice patients are not homebound). In hospice, the patient decides what is a priority and what is not. The hospice team (MD, nurse, social worker, chaplain, volunteers) work with the patient to achieve goals that are defined by the patient, not the hospice team. Without hospice, the patient will die regardless. With hospice, they will be surrounded by those who know and love them, they will most likely be in a place they call home (house, long term care facility, personal care home), they will have ready medications to control pain, nausea, vomiting, shortness of breath and much more. They will know peace, compassion, reassurance, dignity and they will avoid suffering, fear, anxiety and isolation.
- The body decides when it is ready to go, not the hospice nurse. There is a long perpetuated myth that the hospice nurse gives a dose of medication and it kills the patient. That is just WRONG. Here is what actually happened when your loved one passed. Pain and suffering cause the body to have something similar to a FIGHT OR FLIGHT response. The heart rate increases, the respiratory rate either increases or becomes irregular, the blood pressure becomes unstable. Some patients become delirious-talking to long passed loved ones or reliving experiences. The body is bracing itself, constantly trying to deal with the suffering. IN COMES THE HOSPICE NURSE. The hospice nurse is a professional at recognizing the suffering that is going on, even if the family is not. Hospice nurses learn so many ways to detect pain and suffering that have nothing to do with visible indicators. So the nurse gives a dose of pain medication. ……….The pain eases, the patient doesn’t have to brace and fight anymore. When the relief comes, the patient does not fight anymore and lets go. It lets go when it is time to go and not before. OF COURSE this is sad. It is SOOOOOO hard and so painful to lose them. Death is not a celebration of joy. No one ever promised that. But death without suffering is a GIFT. When you ask people what they fear when it is their time to die, they say “pain and suffering”. Very few EVER say they fear death itself.
- A hospice nurse is giving medications AS THEY ARE ORDERED BY A PHYSICIAN. The medication orders are written within safe parameters as to prevent overdose. Safe dosages of drugs like morphine and dilaudid (and others) are well known and well documented. Overdose is not ordered and no nurse who wants to keep her license will deliver medications outside the parameters ordered by the physician. In addition, hospice nurses are very highly trained in medications and dosages as to prevent any accidental over-dosage. Hospice nurses are going to call the physician if they need an order for a higher dose or different medications and they are going to be asked by the MD to describe why they think the patient needs it. In addition, they are going to be required to document what they see in the patient that leads them to believe that suffering is not relieved when they change the dose according to MD orders.
- The first duty of a hospice nurse is COMFORT. Nurses in the hospital or in a clinic or providing home health have a different first duty. Theirs is the duty to heal. But hospice nurses are caring for patients who no longer have healing as the goal. Comfort is the goal. Easing the suffering is the goal. Hospice nurses care for patients under the principle/doctrine of double effect. This doctrine says that if doing something good has a potentially bad side-effect, it’s ethically OK to do it providing the bad side-effect wasn’t intended. This is true even if it is known that the bad effect may likely happen. When the hospice nurse assessed a patient and identifies indicators of suffering, her first duty is to relieve that suffering. She gives medication, because she knows it will ease suffering. She does so knowing that there may be a bad side effect such as lower blood pressure, slower breathing, lower heart rate, patient death. She isn’t giving the medication to cause the bad side effect. And she may know, based on her experience and training that the medication to ease suffering may likely cause a bad effect. In contrast, nurses in other setting will withhold pain medications in the face of obvious suffering for fear of causing the bad sad effect. They have a different first duty. When a nurse gives a medication as ordered to ease suffering, she has done her duty, even if the patient, no longer suffering, stops breathing and their heart stops. A former hospice patient of mine said to her daughter and to me, “If I am dying and in agony, please, please, give me another dose of medication. I am going to die anyway, please don’t make me suffer as I go”.
So, if you have said “Hospice killed my _____________”, please let that go. It’s not true and its keeping you from being grateful that your loved one moved on without pain, suffering and agony. They were going, regardless. Did you want them to suffer? Of course you didn’t. And if you chose hospice for someone who could not speak for them self, you didn’t kill them either. You accepted that they were dying and made sure they had the best possible comfort as they declined and died.
And in future, choose a different hospice company. There are GREAT providers out there who will help you get prepared and help you understand so that you can move on in a way that is healthy and constructive.