The Heartbreak of Making End of Life Decisions

Two years ago, my mother-in-law entered a hospice facility. She was afraid to die and afraid to be alone, so I stayed at the hospice center with her. One of her friends came everyday around noon to relieve me and then I’d go back later in the afternoon and stay the night. After about ten days, I was so exhausted I couldn’t do it anymore. By that time, she was in a coma and she wasn’t going to wake up again. The day she died I was there all day long. I only ran home to pick up my husband so he could be there when it happened, but before we could return, she passed away. I had spent all those hours with her and she died while I was gone. That was hard for me, but I was happy that one of her kids was with her.

Choosing Hospice Care

The final months of her life were very difficult. She suffered from terrible pain. She was given medication to relieve the pain. When that did nothing to help, she went to a specialist who suggested fusing certain vertebrae together. She had Pulmonary Fibrosis, which further complicated things. Additional tests were performed to ensure her body could endure the surgery. The doctors decided to go ahead with the surgery and also biopsied the spine, which confirmed bone cancer. She deteriorated quickly after the surgery and we found ourselves scrambling to figure out what to do first. She needed to put a trust into place, and also set up hospice care so that when the time came everything would be in place.

My mother-in-law decided to go with a private hospice facility that was completely paid for through donations, with no cost ever falling to the patient or the family. She basically agreed to allow hospice take over her health care until the end of her life. From that point on, her medications were prescribed by hospice doctors and delivered directly to the house weekly. She was put on morphine for the pain, but the dose was too high and she had difficulty functioning. Her reaction to the medication quickly rendered her in need of a constant companion. Within days her condition worsened dramatically and it was decided that she be transferred to the onsite hospice facility.

I asked about an IV right away and was told it is not something hospice does, but she could drink and eat as much as she wanted on her own – that definitely bothered me. We were able, however, to have the morphine dose reduced and she soon became herself again. At that point, she refused pain medication all together and sought only to return home, but she was too weak and needed round-the-clock care. We were visited daily by a social worker who insisted that we speak to my mother-in-law about the importance of a DNR (do not resuscitate). But that was a difficult conversation to have considering she was not ready to accept the fact that she was dying. After a few days, a lawyer came in to help her with the trust, and we again tried to talk with her about considering a DNR. She continued to deteriorate and her body was beginning to reject food and water. The pain was unbearable, but still she refused the medication.

The Defining Moment

She was slowly coming to terms with the reality of her situation and finally signed the DNR. The lawyer came the following morning to finalize her trust, and later that afternoon a close friend came and took ownership of her dog. That was the defining moment; she had accepted her fate and was now allowing everything to fall into place. Now she was ready to take the pain medication. The first dose put her in a coma-like state. There was no communication at all. This was difficult on us, so once again we asked that the dose be reduced, and they did. We were able to talk with her again, but the pain was too great so the medicine was increased once again. She fell back into a non-communicative state. At this point, I really started questioning what was happening. I was emotionally and physically drained after days of little to no sleep. We were all so stressed that we didn’t know what the right thing to do was. She died a few days later.

I have wondered ever since if we made the right decisions. It is extremely difficult to watch a loved one die. You don’t want them to be in pain, and at the same time you want to be able to talk to them, to comfort them, and to say goodbye. I was unclear on what exactly the Church taught about end of life care. I had an idea but it wasn’t clear enough.

Advanced Directives

Understanding Church teaching on end of life issues could have helped alleviate some of the guilt I was feeling. After she passed away, I started to search the internet and I found some information written by Reverend Gerald D. Coleman, Daughters of Charity Health Systems. He wrote a pamphlet entitled A Catholic Guide To Critical End of Life Decisions: Advance Directives. Every situation is obviously different but I would like to cover a few of the struggles we experienced.

This guide states that “CPR may be medically futile in the final stages of a terminal illness; or when it procures only a short-term survival” (Part Four, pg. 11). In my mother-in-law’s case, the DNR was legitimate because there was no hope for survival. In fact, we were told that CPR would be futile and it would only crush her bones due to her cancer and be very difficult for the family to witness.

The pamphlet also covers the dilemma of artificial nutrition stating, “There should be a presumption in favor of artificial nutrition and hydration (ANH) unless it is of no benefit to me” (Part One, pg. 4). Artificial nutrition and hydration refers to an IV or a feeding tube. Would ANH have prolonged my mother-in-law’s life? Her body was already rejecting food and water so I don’t think it would have, but I do believe that when she first arrived at the hospice center, she would have had no problem receiving fluids through an IV. Maybe that would have allowed her to return home and have some more time; I suppose we will never know.

The next topic that was pertinent, and maybe the most controversial, was the pain medication. The pamphlet says that “patients should normally not have to accept permanent sedation or coma in order to be comfortable.” (Part Six, pg. 16) This was another huge concern during the entire process. Did she need to be medicated to the point of unconsciousness? The pamphlet also states:

Pain medications can cause you to breathe a little less effectively and even hasten your death. The Church’s teaching is an important guide: “Patients should be kept as free of pain as possible so that they may die comfortably and with dignity, and in the place where they wish to die. Since a person has a right to prepare for his or her death while fully conscious, he or she should not be deprived of consciousness without a compelling reason. Medicines capable of alleviating or suppressing pain may be given to a dying person, even if this therapy may indirectly shorten the person’s life so long as the intent is not to hasten death” (Ethical and Religious Directives for Catholic Health Care Services, no. 61)” (Part Six, pg. 16).

She was already on oxygen for several years due to her pulmonary fibrosis, so her breathing was already hampered. Before she was administered morphine, her breathing was heavy and noisy, but afterwards, it was shallow and silent. It was a dramatic change. I don’t know if that played a part in her death or not, but what I do know is that it left me wondering.

Learning from My Experience

Anyone who has experienced the loss of a loved one knows that the family is suffering too, and decisions are hard to make. There is this need to be reassured that the choices you are making are the right ones, but I never felt reassured, I just felt confused and helpless. They treated my mother-in-law very well there. Everyone was attentive and compassionate, but I think it would have served us, and most importantly her, if we would have been more prepared. Having the information from this pamphlet would have helped us to have a more concrete understanding of the different situations we faced, and how to handle them with more confidence. This experience has taught me the need to impart my wishes, according to my faith, to my family, and I have also defined them very clearly in a trust. I hope that this will help diminish the suffering my family will go through when that time comes. I don’t want them to wonder or feel guilty. I would rather they be at peace with whatever choices need to be made.