I was sitting at my desk one evening, reading through the posts in one of my online groups, when I came across this statement: "I can hardly remember what it was like to take time for granted."
D's husband had been living with pancreatic cancer for almost a year. He had recently been engaged in discussions with his medical team about further options for treatment, including hospice care, and she was talking, in her post, about the potential transition away from cancer-fighting treatment. Perhaps more than anything, for D, the referral to hospice care brought the finite nature of life, a sense of mortality, the "ending of time," to the forefront. And, with it, all of the emotional "work" that she had been mindful of needing to address, but steadfastly avoiding.
Suddenly, she was faced with the terrible shock of adjusting to the news that her husband was not going to be cured of this cancer, and while she was a very bright, rational, well-educated woman, while she had been to every appointment with her husband, listened to the team talk about survival rates and odds and prognoses, while she had done a fair amount of Internet research on pancreatic cancer and understood that it was a deadly cancer, while she had grappled on some levels with the probability that pancreatic cancer would take her husband's life, she had not allowed herself to fully grasp the idea of ending, the reality of an ending too soon to come.
Ours is a death-defying culture in so many ways, and it can be hard to fight the pervasive feeling that offering hospice care as an option (when appropriate) is "giving up." Hard to bear in mind that what we are doing when we explore patients' and families' wishes around end-of-life care is not closing off their hopes for active treatment, but opening the door to some of their deepest, most closely-guarded thoughts, fears, sorrows, and worries. Finding ways to open this door can be one of the most powerful gifts that a healthcare professional can offer patients and families alike. Linda Gorman wrote a wonderful blog on the topic of talking to patients about hospice, with excellent tips on how to do it in a sensitive and compassionate manner.
For D, when hospice was made an official, legitimate option, a treatment choice for her husband, everything changed. The nature of time shifted, her experience of time shifted, suddenly, it became finite and the door was opened to the emotional, psychological, and spiritual work of facing a loss, of finding ways to live fully and to love fully even as a loved one is doing the work of making peace in his relationships and with his connections in this world. The hospice referral was simultaneously devastating and deeply healing. It allowed them both to begin working to heal old wounds, to make practical arrangements, to consciously choose to make memories with family and friends, to focus on the quality of the moment, at least as much as they hoped for quantity. At that point in time, D's husband opted for more chemotherapy and he lived another three months, with, as D says, "gratitude for the time, a kind of appreciation that we didn't have before."
D's husband opted for hospice care when the cancer progressed through that last treatment regimen. D had this to say shortly before he died: "Getting hospice seemed so terminal but actually it has been a blessing. It's like he is now on vacation and is being very well taken care of, such a relief."
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