Most concerns about end-stage COPD boil down to one question: What happens when you can’t breathe?
It can be a major worry for you and your loved ones. But hospice and palliative care can help with that and other issues as you enter the final stages of chronic obstructive pulmonary disease.
When you get a plan in place, it can help lift some of the uncertainty and stress ahead.
Palliative Care
It’s also called supportive care. It focuses on keeping you comfortable and assisting you and your family during your illness. It includes social and emotional support, as well as your physical health. Palliative care also helps all the members of your medical team stay in the loop about your care.
Am I Eligible?
You can get palliative care at any stage. You may want to consider it when your pain is too much, breathing gets labored, or you often end up in the hospital or the ER. Ask your doctor for a palliative care referral.
How Can It Help?
As your COPD worsens, you may pick up repeated lung infections and have trouble walking and breathing. Palliative care helps you manage multiple symptoms and needs, including:
- Pain
- Nausea
- Tiredness
- Weight loss
- Shortness of breath (dyspnea)
- Supplemental oxygen
- Emergency planning
- Depression and anxiety
Your Palliative Care Team
Your regular doctors and nurses treat the medical side of your COPD. Another set of palliative doctors, nurses, and social workers focus on easing the stress and effects from your condition, and they help you and your loved ones set goals for your quality of life.
Hospice
In the last 6 months of your life, palliative care turns into hospice care. This happens when your COPD is no longer treatable and you shift your focus to comfort care, support that provides you with dignity and peace, and dying on your terms.
Hospice, like palliative care, is an approach, not a place. You can receive 24/7 hospice care in a nursing home, a hospital, a hospice center, or in your own home.
Am I Eligible?
You can start hospice care if your doctor says you likely won’t live longer than 6 months. That can be tricky because even severe COPD may not necessarily be terminal. Your doctor may gauge your eligibility with an end-of-life screening tool and by measuring certain criteria you have to meet, such as:
- Trouble with breathing is disabling
- Repeated medical visits or hospitalization for lung infections or respiratory failure
- Low levels of oxygen or high levels of carbon dioxide in the blood
- Right-sided heart failure related to COPD
Another sign you may be ready for hospice is if you don’t want a breathing tube in order to save your life.
If you live longer than 6 months, your doctor can renew your Medicare or other insurance coverage for hospice by certifying that your condition is still terminal.
How Can It Help?
Hospice manages every aspect of end-stage COPD. Doctors, nurses, and other members of your team can help you in many ways. Exactly what you’ll need and for how long isn’t always easy to predict, and your care would be based on what you need. But some common things that hospice can help with include:
- Make an emergency plan for when you can’t breathe
- Guide you through power of attorney, living will, and other legal and medical documents
- Manage pain and other symptoms. Pain management may include medication to help someone who’s in hospice feel more comfortable while seated or lying down.
- Oversee all equipment, supplies, and medications, including oxygen
- Provide around-the-clock support
- Help you dress, bathe, and eat. As people near the end of life, they often lose interest in eating and drinking. Your hospice care team can suggest things that might help -- like offering small snacks, soft foods (if chewing is a problem), or ice chips for hydration -- while also taking the person’s wishes into consideration.
- Offer emotional and spiritual support for you and those close to you
Most hospice centers also offer grief support for families and friends.
Preparing for Hospice
You can ask your doctor to recommend a hospice provider. You also can check the National Hospice and Palliative Care Organization’s “Find a Hospice” online directory to search for providers near you.
If you decide to get hospice in your home, don’t move anything around just yet. Once you pick a hospice provider, they will discuss what medical equipment you need and coordinate delivery and setup.