How much time?
She looked up at me with pleading eyes, her head resting on a freshly laundered pillow case and her hair, still damp, laid out against the white expanse to dry. Her voice was firm as she asked the question that was on her mind. Taking a deep breath of the oxygen that ran to her nose she said, "How much time do I have?" She was not old. Certainly not old enough to die. Just in her late 60's, recently a new grandmother again, she found herself with much to live for and yet with each deep cough she knew the lung cancer was getting ahead of her.
As I wrapped up my hospice visit, I sat back down beside her, to focus in on her question and to carefully think through just what to say-and what not to say.
Whether you work in the emergency room, in a doctor's office, on a med-surg unit or hospice-whatever your field is-the critical question about how much time remains comes up from time to time. How we answer or don't answer that question can have a profound impact on our patient's well-being.
Admittedly, with hospice patients there is at least some expectation, given clinical parameters, that the patient has six months or less to live. But that time frame varies widely and despite our best efforts to meet guidelines that outline expected decline, each person is an individual case where death can creep up unexpectedly or sit coyly in the background long beyond its expected arrival.
Answering this particular question well requires sensitivity, knowledge, and honesty. When any of us faces a shortened life-span, we want to know what to expect. Terminal illness is accompanied by a host of unknowables. Measuring the time left is difficult because of each person's individual disease and progression. We expect the lowered immunity, potential for infections and complications that come along but those are often countered by deep wells of resourcefulness in the individual, and a love and zest for life that triumphs over all expectations. So what do you say?
Probably the #1 answer to that question is, "I don't know"
While this is technically and existentially true, it can be an easy way out for us as professionals. I think a more complete answer involves telling the patient that while we cannot predict with certainty, we pledge ourselves to let them know if we see a change that would indicate the time is near. We can add to that teaching about what generally happens as the time of death nears: increased fatigue, loss of appetite, less time being alert and a gradual shut down of body systems.For family members, there are many books that describe in more details the dying process and what to expect.
"What do you think about how long it will be?"
A second way to address the question involves reflecting it back to them and asking them what they have been told, what they are most concerned about, what is bothering them in particular at this time. This may sound like an evasive maneuver, but it truly does help to clarify the issue, and often what we are hearing is not what they are really asking. When it comes to death, most of us don't want to know specifics as much as functionality-how long will have have with my loved ones? Will I be able to talk/communicate? Will I be in pain? As nurses, we cannot promise total freedom from pain or discomfort but we can offer our commitment to work hard to alleviate symptoms to the best of our ability in conjunction with our health care team.
"Ask you doctor"
This is certainly not recommended phrasing, but sometimes, when all the tests are not in, when the biopsy is still pending, when treatment options are uncertain, we do the patient a disservice by trying to address this end of life question too directly. It can be especially true when dear Aunt Sue has breast cancer and so-and-so died of breast cancer and "I just know I am going to die of it too." The underlying tone of the premature question is one of fear and panic. Sometimes, what is most helpful to to ask the patient (or relative) to wait until all the tests are in, the treatment options are laid out, then resume the discussion. It is not helpful to lay awake at night worrying about something that hasn't happened and may never happen. In these cases, our role becomes one of comforter, of listener, and of encourager.
Try to be as honest as possible
And, no, this does not mean laying on the unvarnished truth with a heavy stroke. There is no such thing as "false hope." Hope is hope and we all need it to continue to survive for even a day or an hour. During admissions, I often tell patients, "Coming into hospice does not mean that you have given up. It means, instead, that modern medical science doesn't have any great treatment options to offer you and your family at this time. But miracles do happen and they can happen even in the context of hospice." This is completely true and I have seen patients "graduate" from hospice as their condition improves. Honesty is the best policy always and at this critical juncture, people really need someone who will maintain eye contact, extend a caring hand, offer a hug, and say truthfully, "I don't really know how long this journey will be. But I do pledge that our team will walk with you through this time and do everything that we can to help you on the journey. We will be with you." Those words can cut to the heart of the fear of being left alone, of suffering without relief. We always need one another, but when it comes to dying, the gift of presence is the best gift their is.
I tried to address my patient's question as honestly as possible. In the course of the conversation, I found out that her new grand baby was due to come for a visit in a week. Her question centered on wondering if she would be here then, and more importantly, would she be able to hold the little one. I told her we would do our best to help her marshal her strength for that event and that we would do everything we could to help her be alert enough to enjoy some grandmother time.
What about you?
Have you found some particular wording that helps you talk with patients about this difficult topic?
How do you answer the question, "How much time do I have?"