Patients' Perspectives:
Hospice: Care at the End of Life
This essay was written by Lynn McKever, whose Mom, Roberta Sinnock, died in 1998 at the age of 73. Because so many of us come, with little preparation, to the decisions Lynn and her family made, we asked her to contribute this to the web site. If you need to make contact with a hospice, please ask the patient's physician about those in your local area. If that doesn't get you satisfactory answers, you can check the resources list that follows the essay or contact us.
My Mother's pulmonologist is the one who referred her to Tucson Medical Center Hospice. His timing was excellent, and I am sure he used his extensive experience well in my Mother's case. He had just performed her second thoracentesis, or lung tap, and knew she could not live much longer. She died four months later.
Hospice care is appropriate for the patient with a limited life-span (less than six months to live according to their physician). While curative treatment ends when hospice care is chosen, relief of pain and symptom management continues, provided by experts in the relief of suffering. Emotional support is offered as well, not only to the dying individual, but to the family as well. Just sharing time with the professionals who knew about dying and did not shy away from our emotions and concerns was useful to my mother and to me.
It would be hard to overstate the value of the TMC Hospice to our family. A nursing supervisor visited us at my Mother's home within a day or two of the referral, bringing with her lots of paperwork and taking plenty of time to explain hospice services. It seemed to me that the hospice staff always had time to answer questions, hold hands and dry tears, in sharp contrast to other, more harried, medical personnel we encountered. It helped that we were referred early, we really got to know our nurse and social worker, and my mom had time to develop a relationship of trust with them and with the volunteer assigned to her.
Most people don't realize that if they are lucky enough to get a chance at a new drug or treatment for their disease they are able to leave hospice care and return to traditional medicine. I think more people would use hospice if they understood their options. Some do shy away from the finality of accepting hospice care, but should know that hospice staff will help them reach a state of acceptance and peace. Under hospice care the focus shifts from the medical prolongation of life to the individual, her comfort, dignity and concerns.
Our hospice provided a full range of services, from weekly nurse visits to social worker check-ins to home health care and finally in-patient hospice care for the last two weeks of my mother's life. While certainly optimal, all those services are just not available everywhere. The best way I know of to choose a hospice is to simply call, talk to the nurses, discover if a rapport exists. It is most important for the patient to do this, if possible, even though hospice services are really for the entire family. If you have a physician you are happy with , ask him or her which hospice he is affiliated with.
At first it was hard for me to talk with our nurse and social worker because I was trying so very hard to be brave and I knew I was facing serious responsibilities. I had already been through months of dealing with medical personnel who were often difficult and unresponsive. Gradually I learned to relax a bit, and by the time my mom went into the in-patient unit I felt completely supported and cared for. I had learned that Nurse Sally could get my mom to take medication much more successfully than I could, that volunteer Shirley could take her for x-rays when I couldn't be there, and that at hospice there were people who could give my mom love and caring.
At the in-patient unit, which was exclusively for hospice patients, the nurses were so very helpful in helping me to understand the dying process and they were willing to share their experience with me. I will always be grateful to the nurse who said to me, as I was getting ready to go home for a few days, "Don't worry about your mom. She hasn't started reaching yet, she will be with us for a few more days". Sure enough, the day after my return she was reaching out frequently, and speaking to her own mother. I knew she was doing what most other patients do, and that she was among staff who understood. The volunteers were wonderful too, providing the extra care and companionship my mother needed when I couldn't be there.
During this time we tried to prepare our 11 and 8 year old children for Grandma's death. Because she focused on her own quality of life, and gave us a marvelous example of facing death with courage and the ability to enjoy each day and each person she met, we did not go into "Grandma is dying" with our children until her death was imminent. Our older child did figure out what was going on on his own, and we tried to answer his questions honestly . We did tell them both, a few months before Hospice came into the picture, that "Grandma has a disease that the doctors can't fix". After my frequent absences to care for her, I was careful not to say that she was better, but only feeling better.
Our younger child was sad that she didn't get to go to the hospice unit to say goodbye , but the distances involved, and my mother's wish not to upset the children made that impossible. Although I wish that had been different, there was a reality I had to face through this entire experience: you can't care for a dying elderly parent and young children at the same time. You can take turns, you can leave each in the care of loving individuals to see to the other, but you simply can't fulfil a child's needs from a hospital room in a far-away city and you can't be the one to take Mother to the doctor 250 miles away on the day of the school play. We have to be satisfied with our best effort.
Several factors helped me in my juggling act. My husband had lost both his parents rather suddenly, and so was very supportive of me and did all he could during my absences. My children were used to our daily routine, and so gained security by doing all the familiar things at the accustomed times even when I wasn't there. Thanks to modern technology, I was able to receive calls from my children on my cell phone, even from the hospital or doctor's office, or while on the road (I drove over 12,000 miles in the six months before my mother's death commuting between our two cities). I sent emails when I wasn't available until midnight, and my children read them upon waking in the morning. The children's teachers gave extra hugs and understanding. And my wonderful friends were always available to provide a ride or an afternoon of supervision when needed.
I prayed for the ability to do things the way my mother wanted, to be sensitive to her needs. I knew it would only be selfish to pray for her life to be prolonged, so I asked for strength instead. My mother was writing a book when she died and was not able to finish. However, as she drew closer to death she seemed to have only one foot in this world and didn't care as much about what had been left undone. She did see her editors a few days before she died and was able to give them instructions on how to finish the last chapter. I was able to send the manuscript off for copyright before she died, and she relaxed considerably after that errand was completed.
Often I was called upon in those last days to be my mother's "legs" and I actually spent a lot of time running errands that were important to her. I guess that says something about the complexity of modern life, but I tried to take the attitude that if she wanted something done I would try to do it and do it her way ! I tried to be sure she had a chance to speak to the loved ones (including me) she wanted , and gently kept the others away. I also made sure she had antibiotics and other medications when she needed them and pain relief she could tolerate. I learned to try to get what she needed on the weekdays, because the weekend on-call nurse really didn't know my mom and her idiosyncrasies.
Her death was very peaceful, judging from her expression and body posture. I wasn't in the room when she died. I had gone to run errands and take a dinner break. The in-patient unit called me and I was allowed to spend plenty of time with my mother's body in her hospice room. Nothing was hurried.
Since that time I have donated artwork my mother did to TMC Hospice which has been used in their fund raising activities. She would be so happy to know that she has helped the organization which gave her so much.
Where You Can Read More About It
The online and offline resources below can help you find out more about hospice and the locations of hospice organizations in your local area.
American Academy of Hospice and Palliative Medicine - This site has an explanation of what you can expect from a hospice.
Hospice Web - This site has a directory of hospices in the United States and internationally. In smaller cities in the US, usually only one hospice exists. For larger cities, several may be available.
Hospice Hands Online Community - This site has a number of links to other hospice sites and to sites where other end-of-life issues are discussed.
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