10 Things I Wish My Patients Knew Before I Met Them

I specialize in end of life care. I am a hospice nurse. Everyone knows that no one will live forever. For those of you who are more familiar with the concept of dying because you, or someone you know has been diagnosed with a terminal illness, I offer the following 10 things I wish your doctor had discussed with you before meeting me :

  1. Signing a Do Not Resuscitate ( DNR ) form means that you no longer qualify for medical care is a false assumption. The word resuscitation means “the action or process of reviving someone from unconsciousness or apparent death”. It does not mean you will not continue to receive medical care. If you fall, you can still go to the ER, if you get sick you can still get an antibiotic, if you require a blood transfusion you can still receive one. Your doctor will continue to monitor you for medication refills or medication changes. You will continue to be treated for pain, shortness of breath, and other medical issues which arise. But, when the time comes your heart stops beating, and there is available proof of your wishes, that being a signed DNR document with both yours and a doctor’s signature, then a doctor or nurse, or the EMTs will not perform CPR, you will not be intubated, or defibrillated, and you will be allowed to experience a natural death.
  2. You will not be offered THE PILL to end your life immediately upon signing a DNR. This is not as ridiculous as you may think. On more than one occasion after a newly admitted patient at the hospice house had signed a DNR and said goodbye to their families as they went home, I was asked while I gave out their next medication if this was THE PILL to end their life. The answer is no, there is nothing further implied by signing a DNR other than acknowledging your desire to not attempt lifesaving measures whenever that time should come. Taking a pill or requesting your doctor to assist you to end your life is euthanasia which is a completely different conversation.
  3. Not signing a DNR only means that you will receive death delaying measures in the event your heart stops beating. It does not mean CPR will be successful, as the statistics of someone with a terminal illness surviving CPR is <1%. Read here about CPR statistical success rates.
  4. Hospice does not require that you sign a DNR. Hospice only requires that you are no longer seeking curative treatment. If a hospice patient has not signed a DNR and has entered the actively dying phase they will be transported via emergency services to the hospital. For more information on what hospice offers read this.
  5. Your primary doctor or your oncologist will bring the subject up of your end of life choices when the time is right, is, unfortunately, something that you cannot, nor should not wait to happen. As a hospice nurse I can tell you these conversations between doctors and patients are not a given, meaning the majority of the people I met had never discussed end of life options with their doctors. The discussion regarding end of life, your end of life choices and preferences should begin not long after your terminal diagnosis. Bringing up the subject of a DNR is not the best case scenario for you or your loved one once you are already entering the active phase of dying. That scenario will definitely add much undo stress on an already very stressful situation. Question, has your doctor brought this subject up yet? Surprisingly, doctors are often uncomfortable discussing death and dying, even oncologists as you can see here, or read here.
  6. You can change your mind and rescind (revoke, cancel) a DNR order at any time. At any time. Be aware that if a signed DNR is not available to be presented at the time needed, your expressed decision to not be resuscitated must be ignored and all attempts will be made to resuscitate you. Medical personnel cannot legally just take the word of your family that ‘this is what you wanted’.
  7.  During your visit to the hospital or hospice house you must have a written DNR order signed by you and a doctor in your chart, just like you must have one present in your home. Do have the physical signed DNR form posted in a visible place in your home, for instance your refrigerator, and do keep the wallet size version on your person. There are also medical ID bracelets and necklace identifying DNR. DNR tattoos are not legally binding to prevent lifesaving measures.
  8. Your health care surrogate ( HCS ) can sign a DNR for you if you are no longer able. Should you become too sick and unable to speak for yourself, which is very likely, who would you trust to be your voice? Do they know how you feel about a DNR, a feeding pump, a ventilator, or invasive procedures? Have you spoken to that person(s) yet? Have you made arrangements for them to be your HCS? Find out more here.
  9. Know your state’s requirement for DNR order. For instance, a Florida DNR form must be printed on Yellow paper only. Be sure to check if your DNR is valid in any state which you may visit.
  10. Consider this: a doctor once conducted a survey of 4,500 (four thousand five hundred) nursing home residents, and found that 1 in 500 residents had a plan about what to do if they became seriously ill. One in only five hundred nursing home residents. Which meant that 499 out of 500 nursing home residents had no plan for what to do if they became seriously ill. Think on that, only 9 out of 4,500 nursing home residents had instruction as to what treatment they would or would not want, versus 4,491 residents who left it up to family to decide what to do for them in the midst of potential life threatening crisis. Listen to Dr Saul in his own words here.

My hope is that after reading through this list, and clicking on the links provided, that you are more informed and better prepared to make decisions based on events that are to come. Perhaps you are beginning to realize that the best person to make decisions about your life and your death is you. You are not alone, there are many of us out there to help and be there when you need us, just let us know what you want.

2 Comments Add yours

  1. Very helpful. We must get better at talking about dying.

  2. meKathy says:

    Agree with you Mary, and I think a good place to start are with the primary physicians and specialists like oncologists that should overcome their own discomfort of dealing with death and dying and talk openly and realistically with their patients. So many people are left to make these kinds of decisions just hours before someone dies..

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