Hospice can be an invaluable resource for people with end-stage COPD and their overworked, overwhelmed caregivers. But before I get into that, let me apologize... I'm writing 3 posts today, and they're all a bit on the depressing side, because they deal with death.
I don't mean to remove all hope for people fairly new to COPD as they read these posts. There are many opportunities for hope and a certain quality of life, even after a diagnosis of COPD. But it's also a fact that COPD is a chronic, progressive illness for which there is no cure. Eventually, death does become a reality. It can take years, but it will happen at some point. So, while it's important to live life to the fullest as long as you can, it's also important for both patient and caregiver to prepare for what is coming in the future.
So, this post is about how hospice can help, and the sooner it is initiated once the end is approaching, the better. Unfortunately, many people do not get referred to hospice (or are not ready to accept it) until far too late. And at that point, there may not be time for hospice staff to do what they are so good at... easing the way to a dignified, peaceful death.
My mom was referred to hospice during a recent hospitalization... and it turned out to be far too late. Although I have said that she was "dying for the last 2 years" more than once, in the end, she deteriorated so rapidly that we weren't even thinking hospice before she went into the hospital. And then it was too late for her (or us) to reap the benefits, for the most part.
What Is Hospice?
Hospice is a concept of care that provides comfort and support (on several levels) to patients and caregivers when traditional medical care can no longer prevent death from coming on, usually within a few weeks or a few months.
Hospice is a team-oriented approach that neither prolongs life nor hastens death**.** According to the Hospice Foundation of America, "the goal of hospice care is to improve the quality of a patient's last days by offering comfort and dignity."
Hospice care is not just about providing physical care, though that is certainly included. It's also about the emotional, social, and spiritual impact of the disease and of the dying process.
Hospice does not usually refer to a place. 80 percent of hospice care is provided in the patient's home. The emphasis is on enhancing comfort and reducing any pain or distress.
Who Needs Hospice?
When the doctor says that nothing more can be done to improve or even maintain respiratory function, and that death is likely within the next one to six months, then hospice should certainly be considered. Hospice doesn't mean giving up... it means making a conscious choice to focus on the quality of your life in your last days and then to go out on your own terms
When you accept hospice, though, you are accepting that you will no longer be accepting life-sustaining or invasive treatments, except in the case of an emergency. It also entails acknowledging "Do Not Resuscitate" (DNR) status. In other words, if your heart or lungs stop working, you do NOT want emergency personnel to initiate treatment that would get things going again.
However, if you were to fall and hit your head or if you broke a bone, then emergency treatment for those would be acceptable, even if you are on hospice.
Once you go on hospice, you are not a prisoner. You CAN change your mind and go off of it. But you can only do that once or twice. So do not take the decision about hospice lightly. Make sure you are ready.
What Does Hospice Offer?
As I've already stated, hospice can be beneficial both to the patient and to the caregiver. I have been a COPD caregiver for more than 4 years, and it takes a toll. So, even if patients are willing to "go it alone", keep in mind how helpful hospice can be to your caregivers.
Most people who have hospice have Medicare health insurance, but both Medicaid and private insurance also often will cover hospice care in qualified people. Here are the hospice services typically covered by Medicare:
- Nursing care and case management
- Physician oversight & sometimes home visits
- Home health aide bath services
- Medical appliances, medication, and supplies
- Spiritual, dietary, and other counseling
- Trained volunteers for patient companionship & caregiver respite
- Social work services
- 24/7 on-call availability
Most people think of hospice in relation to cancer patients, but it can also be helpful to a respiratory patient. As death approaches in someone with COPD, breathing gets harder and harder and air hunger, fear and stress can develop.
Hospice nurses can help tweak oxygen levels and delivery methods, along with morphine and other medicines to control this air hunger and emotional stress. How much will that contribute to a more peaceful, gentler COPD death?
How to Learn More About Hospice
The Hospice Foundation of America website has lots of information about hospice, such as their Myths and Facts About Hospice page and their Hospice Stories section.
You can also talk with your doctor about hospice, and/or talk with the staff at one of the local hospices in your area. You should be able to find them listed on the Web or in the yellow pages of a phone book. Local hospitals may have their own hospices or be able to refer you to one as well.
My Personal Hospice Experience
My mom was diagnosed with COPD back in December 2005. Although she went on oxygen, for a couple of years, she still seemed pretty healthy. Then, in February of 2007, she developed pneumonia and was hospitalized. At that time, her doctor suddenly referred her to hospice, telling us it was not just for dying patients (which is not really true).
At that point in time, neither mom or I was prepared to think of her as imminently terminal, but we accepted hospice and they initiated services that seemed more like traditional homecare than anything else. Unfortunately, about 6 weeks later, mom's femur broke and hospice was cancelled so she could have the leg surgically repaired.
2007 was a rough year, with 5 hospitalizations in total. On the 4th one, we thought we were going to lose Mom, but by 2008, she was on the mend and over the next year got better and better, often not really even needing her oxygen. Hospice was a distant memory.
Towards the end of 2009, Mom's breathing started to gradually worsen and I started wondering how much longer she could go on. But she soldiered on, adapting to every little change. Her current doctor talked about hospice when Mom started to ask questions about what the end would be like, but it still didn't seem like time.
Then, in early November of 2011, Mom just suddenly decompensated, breathing-wise, and had to be hospitalized. Within a week, the doctors decided her lung deterioration was so far advanced, there was nothing more to be done, and started to prepare her to come home to die, which is what Mom wanted so badly.
A hospice referral was initiated, and they helped us with the whirlwind of preparation to bring Mom home on 12 LPM of oxygen (2 concentrators!), a CPAP machine, and kinds of other equipment and medication. It felt like we were setting up an at-home hospital room.
Mom came home on her birthday, and it was a joyful day for her, though also exhausting and with a few scary moments for both her and me. The hospice nurse spent 4 hours with us, getting us situated and setting up support services for the future. I was grabbing that lifeline, as the thought of being chained to my home 24/7 (Mom couldn't be left alone) was pretty overwhelming and terrifying.
We thought we had at least 3 months to prepare and deal with the dying process. But Mom had other ideas. She passed away early the next morning. In the end, all that the hospice team was able to do for us was set things up and then to come out and pronounce her so that we didn't have to call the police or coroner. Those things were great, but there is so much more hospice could have done for us, had there been more time.
So, our experience was that first we got hospice way too early and then in the end, way too late.
If you are starting to sense that your life is coming to a close, at least start thinking about hospice and what it can do for you and yours. Don't wait until the end is right there before you take action!