I’ve been asked recently to write about hospice and how that applies to those facing lung cancer.
The one thing I hear regularly is that people often wait until the last possible moment to call in hospice.
Recently there was a study that showed patients who entered hospice care earlier actually lived longer and had a better quality of life. http://www.nytimes.com/2010/08/19/health/19care.html This study showed patients who began receiving palliative care immediately upon diagnosis not only were happier, more mobile and in less pain as the end neared — but they also lived nearly three months longer.
There could be many reasons why a patient and their family waits until the last-minute to utilize hospice care but mainly, I think, it’s because people think that by calling in hospice they are “giving up” the fight against cancer.
That’s a tough one, especially when it may feel like you are giving up hope, but try thinking about it in this way.
According to the Hospice Foundation of America, hospice is a special concept of care designed to provide comfort and support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatments.
Hospice care neither prolongs life nor hastens death. Hospice staff and volunteers offer a specialized knowledge of medical care, including pain management. The goal of hospice care is to improve the quality of a patient’s last days by offering comfort and dignity.
That is what we all want in our last days right? Comfort and dignity? I believe so. But what if we don’t recognize our last days or the last days of a loved one? What if there is no plan for hospice or agreement for when to enter hospice care?
THAT’s where stories about hospice teeter between being praising in nature or more like horror stories.
What can be done to improve our experiences with hospice care?
An open dialog about hospice between medical professionals, patients and their families is crucial. People need to know what hospice is, what they do and what they don’t do. They also need to be prompted by their medical professionals to ask questions, made comfortable enough to voice concerns and fears and there must be a frank conversation between loved ones. The patient needs to know that it is ok to enter hospice care, without being made to feel like it means giving up.
People need to know that hospice care can be done in your own home and when medically possible that patients can stay in the comfort of their own homes.
Make decisions concerning hospice before the patient ever reaches the need for hospice care. This is something all of us, with critical illness or not, should consider doing along with wills, living wills, power of attorneys and directives. Hospice care should be something decided upon early in a diagnosis.
Reiteration that hospice care is not giving up hope. There is always hope. There are those stories of people who have entered hospice, only to improve in their health and return to active treatment against their cancer and survive. It can happen.
Communicate with your hospice provider. Ask and get answers to all your questions. explain what your expectations are of them. Let them know what YOU expect of THEM and what is appropriate or inappropriate behavior according to your personal beliefs, religious views and morals.
Recently I read on LUNGevity’s Lung Cancer Support Community an amazing experience with hospice and how a hospice team made the final weeks of a patient’s life peaceful and memorable. The poster raved about how much support they provided to her family during those last weeks and how much that helped in their grieving process.
Another story I read about was how clinical and cold a specific hospice experience was. This patient had entered hospice care only a few days before he passed away and his pain management and care had been very technical and not very compassionate. The nurses spoke openly of his impending death to the family, in front of the patient, and his wife was mortified. It was not the peaceful or calming presence she had expected. She was sad that this was her husbands last experience and that hearing about his pending death and the process of his death was a terrifying experience for him.
I believe if we follow the principles listed above we can prevent the outcome of the second story and ensure the most peaceful experience possible with hospice.
Lung cancer can be a fast and furious disease. It’s the leading cancer killer with the highest mortality rate. The timeline from moment of diagnosis to hospice care can be very short so it’s easy to be caught in a whirlwind of decision-making and uncertain choices. As with anything in life, it’s good to be prepared. Talk to your families, write down your wishes and then spend every moment with those you love.
What is that saying? Prepare for the worst but hope for the best. The worst may take decades to reach fruition.
And never give up hope. The one thing I’ve seen in the past 8 years of being a patient advocate is MORE survivors.
At LUNGevity Foundation, they are funding lung cancer research so that even more people can survive this disease!