Bryan: I know what a difficult time this is and how hard it is to negotiate the emotional and practical details of these decisions. My wife Donna was diagnosed with stage IV NSCLC back in January of 2009. She was told she had six months left. Based on her diagnosis and what the evidence said it was correct. The reality was different, she was asymptomatic and the distant mets in the brain was operative. Our oncologist approached her cancer in what I would call a palliative fashion. We knew there was no cure but we could manage the tumors and side effects with chemo. And they did. Here is what I believe is a good definition of palliative care.

Palliative care means patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice.

— 73 FR 32204, June 5, 2008 Medicare Hospice Conditions of Participation – Final Rule

And that is what we received. It wasn’t until a year ago that Donna was admitted to the hospital to have some fluid around her lung drained. At that time she was told that the current chemo was not working. We knew what that meant and were not prepared for the formal discussion of palliative care. The draining of the fluid was not working and the cancer was winning. Donna was to be sent home for home hospice but she was deteriorating and the oncologist and the palliative care team took one look at me and knew I would fail at this. They admitted her to the hospice unit a week later. Today is in fact the day last year she went into the hospital and a week later to hospice. On August 7 she passed away. I can only repeat what I’ve heard ‘Hospice saved my life’ and allowed me to be the caregiver, husband, and champion for Donna.

The above is the factual reality of my experience. On another level there is so much more to share. Donna’s care from the moment she was diagnosed to her death was done knowing this had no good end. The healthcare team was always looking ahead, looking at Donna, looking at what our needs and wants were and me. We were the center of their world from day one. We were people facing a horrific time and they were there to make it easier. Never once did we get the impression they didn’t feel our hurt and fear. That is my impression of palliative and hospice care. It is not putting an elderly family in a kayak and pushing it out to sea. It is the community, the village we have lost in our modern world.

Hospice was hard for both of us because we knew what it meant. And to be perfectly honest Donna and I are familiar with medicine and have a take not prisoners attitude. So to that end my role in hospice was to ensure I was there and watched and participated in her care and comfort. And to tell you the truth of all the physicians and nurses I have worked with over the years both professionally and personally the hospice and palliative care team were the most understanding and committed I have ever met. They wanted both of us to be part of this and that meant the world to me. It made those last weeks not less painful emotionally but more complete. I was there caring for her or making sure she was cared for. Her linens were always changed, she was comfortable, they let me bring the dog to see her, they asked about me, and they fed me, on and on. Again, my experience is based on me being a take-charge person. If you can define your role and the role of the family and the needs and desire of your father the team will meet it.

Look at palliation as a tool to aid both your father and the family in having a good quality of life. Look at hospice as continuing that quality of life. I know I know it is not life sustaining but it is life enforcing. And for me I can look back and focus on Donna and not on her suffering or pain but on my being part of the care team. I am not struggling with did I let her suffer but what 29+ years meant to me.

Here are some practical tips from me to you. The moderator may not want me to practice but hell with it I am a New Yorker. And as I have said this was Donna’s death and mine so my rules to a point.

Identify what your father wants and match that to the family. At the same time understand that there is a natural fear of hospice etc. Palliation and hospice is a means to achieve your goals not an impediment.

If you have the time and energy be part of the care team. By that I mean talk with them ALL of them from Chaplin to nurse to physician to aid to social worker and not just for your father but also for you and the family. Avail yourself of their experience, expertise, skill, knowledge, and love. They are there for you as well as your dad.

Don’t be afraid to speak up. I mean that in a constructive fashion. Ask questions, make comments, and understand what they are doing. Don’t second-guess as much as ask about alternatives. And remember the smartest members of the team are the nurses and the directors of palliation. The residents and fellows are ok but not as smart since they are learning. Make the nurses your friend.

And at some point you will not be using the hospice. Avail yourself of all the services they have after. They want to help the survivors.

I hope this helps.