How Palliative Care Can Help You Live a Better Life At Any Stage of COPD
Palliative care is a type of treatment designed specifically to provide comfort and support to people with serious chronic diseases. Unfortunately, despite the many benefits it can offer COPD patients, palliative care is extremely under-utilized by people with COPD.
This is largely due to the fact that most people aren't familiar with palliative care options for people with chronic respiratory diseases. Even those that are, however, often don't realize when or if they are eligible for palliative care.
Of course, it doesn't help that palliative care has gained a less-than-appealing reputation as a kind of hospice service for end-of-life care. To the contrary, palliative care is available for people with varying degrees of COPD severity; it's not just for those in the terminal stages of the disease.
In this post, we're going to do our best to bust that bad reputation and dispel the myths that discourage people with COPD and other chronic respiratory diseases from seeking palliative care. We'll also explore the specific ways that palliative care can help COPD patients and their loved ones better navigate the difficulties of living with chronic disease.
We'll even walk you through the process of getting into a palliative healthcare program and what you can expect when you start palliative care. We'll cover everything from how to know if you're eligible for palliative treatment, how to know if your insurance will cover it, and how to get in touch with palliative care specialists near you.
If you think that you or a loved one with COPD might benefit from palliative care, or you're just interested in learning more about what it has to offer, this post is meant for you. We believe that every person with COPD deserves top-notch treatment, and we hope that information in this guide will encourage more COPD patients to consider palliative treatment.
What is Palliative Care?
Palliative care is essentially a special branch of healthcare dedicated to helping people cope with the difficulties of living with severe and long-lasting illnesses. It includes a wide range of services that can be tailored to meet the specific needs and concerns of individual patients.
Here are some examples of common services and treatments offered through palliative care:
- Symptom relief (including both symptoms caused by the disease and side-effects of medications)
- Pain relief
- Emotional and psychological support
- Physical/occupational therapy
Palliative Care Versus Curative Care
Palliative care is often differentiated from “curative” care due to subtle—yet important—differences in how the two branches of medicine approach patient care. While curative care tends to focus on treating patients' underlying health problems (e.g. improving lung function and preventing exacerbations), palliative care focuses on improving patient comfort and quality of life (e.g. relieving chest pain and reducing breathlessness sensations).
Put another way, curative care practitioners are trained to balance the risks of medication and treatments with tangible health improvements (e.g. increased lung function and physical strength). Because of this, they are often more hesitant to prescribe treatments (e.g. oxygen therapy) when they aren't strictly necessary for the patient's health.
On the other hand, palliative care practitioners are specially trained to balance the risks of treatments with the patients' subjective well-being in addition to their physical health. This makes them better equipped to prescribe treatments that reduce pain and suffering resulting from complex, severe, and life-threatening illnesses.
That said, there is not exactly a hard line separating curative and palliative care. They are not mutually exclusive, for example, and there is often overlap between the treatments used in palliative and curative care.
Some people, particularly those those with chronic, lifelong diseases (like COPD), receive both curative and palliative care at the same time. Some only receive one or the other; for example, some patients with incurable illnesses (for which there is no known treatment) are solely treated with palliative care.
Some patients switch from curative to palliative care suddenly (e.g. after a major diagnosis) while others make a gradual transition from curative to palliative care. In the case of chronic diseases like COPD, this transition usually follows the progression of the illness, starting in the later stages of the disease.
Who Benefits from Palliative Care?
Palliative care is available for people with a wide range of health conditions, especially serious, chronic, and terminal diseases. Contrary to popular belief, however, you don't have to have a life-threatening condition to benefit; palliative care can help at any stage of a chronic illness, including the earlier stages of COPD and other chronic respiratory diseases.
Here's a list of some common health conditions that can be treated with palliative care:
- COPD and other chronic lung diseases (e.g. cystic fibrosis)
- Heart disease
- Both curable and incurable cancers
- Alzheimer's and dementia
- Multiple sclerosis
If you think you might be interested in palliative care, don't be afraid to bring it up with your doctor. It's never too early or too late to start the conversation and learn about palliative care options that can help you (whether now or in the future).
What Does Palliative Care Look Like?
Because palliative care is tailored to individual needs and circumstances, there is no one-size-fits-all approach. Palliative care can take many different forms and every person's experience receiving palliative treatment is unique.
Most commonly, palliative care is provided by hospitals, hospices, and long-term care facilities because these are the places that tend to treat patients with the most severe symptoms and advanced forms of disease. However, you can also get palliative care from outpatient facilities; in some cases, you can even get basic palliative treatments (such as pain relief) from your usual doctor and/or COPD treatment team.
Palliative Care for COPD
Now that you know what palliative care is and who it's meant for, let's take a closer look at what palliative care looks like specifically for people with chronic respiratory conditions like COPD.
In the following sections, we'll discuss how palliative care is administered to COPD patients, including specific treatments and benefits that people with COPD and other respiratory diseases can get from palliative care. This should give you a better idea of what to expect—and what you can look forward to—if and/or when you (or a loved one) decides to seek palliative care.
How Can COPD Patients Benefit from Palliative Care
Most of the palliative care treatments for COPD are aimed at relieving the burden of the physical and mental symptoms caused by their disease. The benefits of these treatments include:
- Reduced chest pain
- Reduced fatigue
- Reduced shortness of breath
- Improved physical comfort
- Improved sleep
- Improved mental health (e.g. reduced anxiety and depression)
- Improved overall quality of life
Here are some of common COPD symptoms that can be treated with palliative care:
- Chest pain
- Shortness of breath
- Poor appetite & difficulty eating
- Poor sleep
Palliative care can also have a downstream effect that benefits your loved ones, especially those who have taken on caretaker roles. When your primary needs are being taken care of by palliative treatment, your family doesn't have to worry as much or shoulder as much of the care-giving burden, leaving more room to establish and strengthen normal friend and family bonds.
What Kinds of Palliative Care Treatments Are There for People with COPD?
Palliative care for COPD can include a wide variety of therapies and treatments. This includes treatments designed specifically for COPD and respiratory disease patients as well as generalized treatments designed to treat common symptoms (e.g. pain and fatigue) affecting people with chronic disease.
Generalized palliative care treatments that can help COPD patients include medications and physical therapies to relieve chest pain, muscle soreness, and physical fatigue. You can also get mental health support for psychological problems (e.g. health-related anxiety and depression), which are very common among people with COPD.
You can also get help with problems related to appetite and eating, which are common in people with advanced COPD. A palliative care team can, for example, get you working with dietary and nutrition specialists that can provide you with a tailored meal plan and personalized dietary advice.
COPD-specific palliative treatments include efforts to reduce the discomfort of breathing and shortness of breath with medications such as inhalers, opioid medications, and supplemental oxygen. It can also include physical therapy and respiratory disease education that teaches skills for managing symptoms and carrying out daily tasks.
There are also treatments for patients who struggle with shortness of breath while sleeping or otherwise have difficulty getting restful sleep. These include sleep-inducing medications and respiratory therapies (e.g. CPAP, BiPAP, and supplemental oxygen therapy) that help you breathe easier while you sleep.
Some treatments that palliative care can provide are not typically offered by doctors that practice curative COPD care. These include opiate medications, which studies show can significantly reduce shortness of breath in (some) severely breathless patients, especially those in the later stages of COPD.
Of course, opiates have many health risks and, ultimately, only treat diseases symptoms; they don't treat the underlying cause of the disease. This makes many curative healthcare practitioners hesitant to prescribe them in the absence of a compelling physical health need.
Palliative care specialists, on the other hand, are better equipped to evaluate the risks of opiates and other medications for patients compared to the subjective benefits (e.g. reduced patient suffering) even if they aren't exactly necessary to treat the disease. They are also specially trained to treat symptoms in the most complex and difficult situations, including in patients with multiple co-morbid diseases (a circumstance that is common among people with COPD).
In some cases, palliative care can offer COPD patients easier access to supplemental oxygen therapy, which is normally only prescribed to treat low blood oxygen levels. Patients receiving palliative care, however, are sometimes prescribed supplemental oxygen to relieve breathlessness, even if their blood oxygen levels aren't quite low enough to justify it on its own.
Myths and Misconceptions About Palliative Care
Palliative care is a commonly misunderstood healthcare service, which is likely due to the fact that relatively few people have had real-life experiences with palliative care. As a result, many people have false ideas about palliative treatment, including what it is, who it's meant for, and what kinds of symptoms it can treat.
These misconceptions discourage some people from seeking palliative care despite that they could benefit from it significantly. So, before we share some tips for how to get started with palliative treatment (the final part of this guide), let's take a minute to discuss—and bust—some of the most common myths about palliative care.
Palliative Care is Only for People Who Are Dying
Unfortunately, one of the main reasons why people with chronic diseases don't get palliative care is that they simply don't realize it's an option. Either they don't know that it exists, or they (mistakenly) assume that they're not sick enough; they think that palliative care is meant for other kinds of patients, not them.
That's because palliative care has a reputation of being just like hospice, a holdover from when that used to be what palliative care was for. As we mentioned earlier, palliative care originated as an end-of-life health service for terminally ill patients, and this is still a major function of palliative care today.
However, the scope of palliative care has expanded significantly over the years to include services for patients with a wide range of health conditions. As a result, palliative care is now available to people with less severe diseases, including people with any stage or severity of COPD.
Unfortunately, many people still make the false assumption that you have to be on your deathbed (or at least getting near it) to qualify for palliative care. Luckily, many healthcare professionals are aware of this problem and are working to raise awareness about the broad scope of palliative care.
Accepting Palliative Care Means I've Given Up
Some patients are afraid to accept palliative care (or even downright refuse it) because they're afraid of what it might mean. For some people, starting palliative care feels like they're losing or giving up something, or even giving in to their disease.
But the truth is that accepting help when you need it isn't a weakness, nor is it an admission of defeat. In fact, it's the farthest thing from it; it means that you're still willing to fight for your own well-being, that you still have hope your future and maintaining a good quality of life.
Of course, it can still be very scary to face the reality of living with a chronic illness, which is something you just can't avoid in palliative care. But ignoring it won't change reality or make anything better—it will only make things worse by discouraging you from getting the help and support that could allow you to live a happier, more comfortable life with COPD.
Palliative Care is Useless
Hopefully we've done enough so far to convince you that palliative care isn't useless, but it remains a common worry among those that are hesitant to accept palliative care. They worry that it's a waste of time, that it won't be able to help them, or that it's not worth the extra effort and expense.
Of course, while not everyone who gets palliative care will see major benefits, you shouldn't assume that it won't work without at least figuring out if it's true. As we've discussed already, palliative care can provide all kinds of worthwhile benefits to respiratory disease patients, ranging from improved breathing symptoms to increased appetite and more restful sleep.
Additionally, what we've talked about so far is far from comprehensive; palliative care can provide benefits for people dealing with all kinds of different symptoms, ailments, and diseases that we haven't mentioned in this guide. In fact, palliative care is designed to provide solutions for uncommon and difficult-to-manage symptoms which haven't (or can't) be adequately addressed by curative care.
No matter what symptoms or ailments you're suffering from, it's worth looking into whether or not they can be treated with palliative care. You never know until you try; worst case scenario, nothing changes. But in the best case scenario, you could get some real, meaningful relief.
How to Get Palliative Care for COPD and Other Chronic Respiratory Diseases
Getting palliative care is not always a straightforward process. It can be very difficult for people—especially those with chronic illnesses like COPD—to know when they need palliative treatment. And, even when you do, it's not always clear how to access that kind of care.
So, in these final sections, we'd like to take a closer look at what it takes to get palliative treatment for COPD. We'll discuss how to get process started, how to manage the costs of treatment, and everything else you need to know about how to secure palliative care for yourself or a loved one with COPD.
Talk to Your Doctor
If you are interested in palliative care, the first step is to talk to your doctor and/or your COPD treatment team to figure out when and if palliative care is appropriate. As we discussed earlier in this guide, the answers to those questions are different for every patient and depend on each individuals' circumstances and needs.
Unfortunately, there's no easy way to pinpoint an exact time in the course of COPD treatment when you should begin palliative care. That's why it's up to you and your COPD treatment team to figure out what's right for you.
As one research review on palliative care for COPD put it, “there is often no clearly identifiable point at which [COPD] management changes from active supportive therapy to palliative care, and it's usually a matter of experienced clinical judgment.” This is why it's important to discuss future treatment options with your COPD treatment team early on and throughout the course of your COPD care.
Clear and open communication with your treatment team is key for ensuring that they are aware of—and taking care of—all your healthcare needs. They will be an integral part of the process when and if you begin palliative treatment, so don't be afraid to communicate with your doctor(s) about where your treatment is headed and when you should start thinking about palliative care.
Get in Touch with a Palliative Care Specialist
If you are a COPD patient that only needs basic palliative treatment, your regular doctor and/or treatment team might administer those treatments on their own. In fact, many COPD patients receiving standard COPD care are receiving some kind of palliative treatment whether or not it's explicitly referred to as “palliative care.”
In cases where you need more extensive palliative support, your doctor might refer you to a palliative care specialist. If you need help, your doctor can get you in touch with palliative care services in your area that can offer the kinds of services you need.
You can also inquire about palliative care services anytime you are hospitalized or receiving treatment in an assisted living facility. You can also locate palliative care specialists near you on your own through your insurance provider's directory or by searching your city, state, or zip code in the web directory at Get Palliative Care.
Securing Insurance Coverage for Palliative Care
Unfortunately, we can't talk about the realities of accessing palliative care in America without also discussing the financial costs. Just like every kind of healthcare, palliative care can get expensive, and the vast majority of people don't have the up-front cash to handle major medical expenses on their own.
Because of this, many people's ability to get palliative care depends on whether or not their health insurance will cover the cost. And because health insurance benefits vary widely between different plans and providers (even Medicare plans can vary state by state), there's no way to know for sure what your insurance provider will cover without looking at your personal benefit plan.
Fortunately, most medicare and private insurance plans cover at least some palliative care services; unfortunately, not everyone qualifies for coverage. Medicare, for example, usually only covers palliative care for terminally ill patients who are nearing end of life and are no longer receiving curative care.
Some private insurance plans have broader criteria and will approve palliative treatment for patients in less severe circumstances. It all depends on your particular benefit plan, which is why it's vital to review all of your insurance plan's rules, benefits, and exceptions before starting palliative care.
If you are ever unsure about whether a particular healthcare service (palliative care or otherwise) is covered by your insurance, calling your health insurance representative directly is the best way to find out. The closer you work with your insurance company to cover all your bases, the less likely you are to get blindsided by surprise bills, claim rejections, and out-of-network fees.
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