Hospice: It Saved Our Lives

My father was diagnosed with metastatic lung cancer in the spring of 2002. He'd never smoked a day in his life, but he spent most of his years breathing Southern California air, and shared an office for many years with smokers before the hazard of second-hand smoke was realized. His doctors prescribed chemotherapy, not to cure him but to give him more time, as they considered his condition terminal and predicted he would only live another six to eighteen months, depending on how he responded to the chemo.

Our family was devastated by the news of course. He was a good man - a loving husband for 53 years, a wonderful father and grandfather to his three children and three grandchildren, and a supportive friend. He was too young to die at 75, and we couldn't face the idea of a future without him. So we practiced positive thinking and prayed for a miracle.

But we weren't going to get a miracle, and by summer it was obvious that the chemotherapy wasn't helping him. The doctors had hoped the chemo would buy him some more time, but it was actually causing us to lose time with him as it made him sick and weak, and the anti-nausea and pain medication caused him to sleep most of the time. He was in and out of the hospital four times in four months, and losing ground steadily. So by the end of the summer, during his last hospital stay, it was decided that he would discontinue the chemotherapy and begin home hospice care. The doctors had done the best they could for him, but it wasn't working, and it was time to let him rest.

My parents still lived in Southern California, and I had moved to the Midwest - but I visited as often as I could during those final months of his life. I flew out within a month of his diagnosis, and then again in mid-summer to celebrate his 75th birthday. Each time I visited his condition deteriorated - he lost weight, he lost his hair, he lost the twinkle in his blue eyes. He slept a lot, and was in quite a bit of pain and discomfort. It was devastating for all who loved him to see him suffer so much. So it was with a sense of relief tinged with sadness that I received the call from my sister letting me know that he had chosen home hospice care and would be going home to die.

I flew out in early September to help my mother and sister care for my father at home. Hospice personnel had set things up the day before I arrived - a hospital bed in my parents’ room and IV medication to ease his pain and make him comfortable. My mother, sister, and I fell into an easy routine of caring for my father, much to our surprise. Someone from hospice came every day during the week - a nurse three days a week, a nursing aide the other two days, and a social worker visited every couple of weeks. When they weren't there in person they were available by phone, and would come for extra visits if a need arose (which happened a few times). In between their visits we cared for my father, which proved easier than we imagined because of how well hospice had set things up to manage his care.

It became apparent early on that hospice care wasn't just limited to the patient - family members and other caregivers benefit from hospice care as well. The social worker met with us several times, and spent quite a bit of time offering emotional support to my mother. She was also available by phone any time one of us needed to talk. A chaplain also visited, but my mother had already connected emotionally with the social worker and had her own pastor, so that was one service we didn't really need. They also arranged for medications to be delivered to our door so that we didn't have to go out and fill prescriptions.

One of the most amazing things to me was how well the nurses took care of all of us, not just Dad. I knew the social worker and chaplain would be a good support system, but I hadn't realized that the nurses would be such loving caregivers for us as well. We had one regular nurse, Pat, who came most of the time, and a back-up nurse, Joy, who was a family friend. When Pat arrived at our door she greeted us all with a hug, asked how we were doing, and then went immediately to see my father. She changed his IV bags, checked his vitals, talked to him about pain management and other issues of concern. And then before she left, it became routine for us to all sit and talk with her in the living room. She'd ask how we were, answer questions, offer support and care, and make sure we were taking good care of ourselves. She became our lifeline in more ways than one.

A couple of times we had emergencies in the middle of the night, and we met other hospice staff - one time my father's pain got so severe we needed assistance to help him (hospice wants a patient to be as comfortable as possible, with minimal pain, and so they will come any time, day or night, to make adjustments so that the patient experiences relief). Another time my father tried to pull out his catheter and an on-call nurse came right away to remedy the situation, treating us with patience and kindness even though we'd never met, and even though it was 2:00 a.m.

The last day of my father's life his breathing became more ragged, and we suspected the end was near. We called Pat who said she'd be there as soon as she could, but that she was on another case and it would be a while before she could make it. She suggested we call Joy to see if she could come over, and of course she came right away, even though she'd been out of town on vacation and literally had just stepped off a plane. When she came into his room she spoke softly to him (even though he'd not been conscious for four days, she spoke to him as if he could hear her, which perhaps he could). She let him know she was there and that she was going to take his blood pressure. Within moments of her arrival he was gone, as if he'd been waiting for her to get there so that she could take care of us after he passed. Pat arrived shortly thereafter, and together they helped us make the necessary final arrangements - they called the coroner’s office to get a death certificate issued, the funeral home to arrange pick-up of his body, etc. We didn't have to do anything other than say goodbye, and before they left, they shared tears and laughter with us in a sort of informal "wake" as we shared stories of those final weeks with Dad.

The hardest thing I've ever had to face in my life was the death of my father - and even now after three years, I still miss him terribly. But every time I recall those final weeks of his life, I also remember the loving care given to all of us by hospice. My father was only a hospice patient for a month before he died, but the benefits of their care for him, and for us, linger still, and I will be forever grateful for what they did for our family.

In situation where a loved one is dying, I cannot recommend hospice highly enough.