For patients with a terminal illness such as mesothelioma cancer, there may come a time when efforts to slow the disease or halt its progression are not working and the treatments the patient is receiving may be doing more harm than good. If this time should come, individuals who are in the last stages of their life should be aware that a specialized type of care exists – hospice care.
Many people confuse “hospice” with a physical place; however, hospice care is not a building or center, but a type of care. Patients can receive hospice care in many different settings, including their own home, a nursing home, a residential facility, or an assisted-care facility.
What is different about hospice care from other types of cancer treatment is that it provides specialized care to individuals who have only a short time left to live, usually a few months or even a few weeks. It is designed with the sole purpose of providing quality care and support to patients and their family members during this late stage of their illness.
The goal of hospice care is to focus on a patient’s comfort and quality of life. Stated another way, it is designed to help ensure the person’s last few months, weeks, and days of life are as fulfilling and free from pain and discomfort as possible. It is also a time for family members to come to terms with grief and emotional stress, as well as have an opportunity to say goodbye and talk with their loved one about their wishes for when they have passed away.
When is it Time for Hospice Care?
It is important to know that hospice care is not about giving up. It’s about providing comfort, offering dignity, and improving quality of life. In essence, it’s about giving the patient control to deal with the end of their life on their own terms.
But how can a patient and their family members know when it’s time for hospice care? The decision to begin hospice care is a difficult and complex one to make, but ultimately it is a personal decision. Getting some input from loved ones and medical team is a good place to start.
From a medical standpoint, patients should remember that at a certain point, doing “everything possible” may no longer be helping you, and there may come a time when the burdens of a treatment outweigh the benefits. For example, another round of chemotherapy might give you another month of life – but it could also make you feel too unwell to enjoy that time. Although doctors will always help you assess the advantages and disadvantages of specific treatments, it may be the case that trying to enjoy the last few months of life as much as possible is the best route to consider.
Unfortunately most people don’t receive hospice care until the final weeks or days of life, thereby missing out on months of quality time. While hospice care puts a focus on quality of life, it does not mean that patients miss out on medical treatments. While receiving hospice care patients can continue to receive treatments that are maintaining or improving their quality of life.
Common Myths about Hospice Care
Many people have heard things about hospice care that may be based on ignorance or a lack of familiarity with the process. These misconceptions about hospice care can lead to certain prejudices or cause people to refrain from seeking care based on their misunderstanding.
Here are some common myths people believe about hospice care, along with information about the reality.
Only Bedridden Patients Are Eligible for Hospice Care
Hospice care is appropriate for anyone who has been diagnosed with a disease that gives them a prognosis of less than six months left to live. Hospice can be given regardless of the patient’s physical condition, including whether or not they are mobile.
Many patients receiving hospice still continue to lead productive and rewarding lives. The philosophy behind providing hospice care is to make patients as comfortable as possible, regardless of what their specific physical condition is.
Hospice Is Only for the Last Few Weeks/Days of Life
The fact is that most people are eligible for hospice care if they likely have 6 months or less to live. In fact, some insurers, including Medicaid/Medicare agencies in certain states, cover hospice for a full year.
Although many people don’t receive hospice care until the final weeks or days of life, it is possible to start hospice care much sooner. The decision about when to begin hospice care is something that patients should discuss with their doctors and loved ones to determine the right time to begin care.
Hospice Care Is Limited to Medical Services
In addition to health care services, hospice care can also provide a variety of other types of care, including:
- Emotional support to help patients deal with grief, anger, and other feelings they may have due to their terminal illness.
- Spiritual and religious resources for patients who wish to receive counseling based on their personal beliefs.
- Recreational services to help patients keep their minds active and prevent them from worrying and focusing on the course of their disease.
- A comfortable environment to help patients feel as relaxed, safe, and secure as possible.
In most cases, patients will have an entire team of hospice care providers who can help them with these and other issues that come up.
Choosing Hospice Means You Lose Your Primary Care Doctor
When receiving hospice care, much of the choice about whom and where to receive care rests with the patient. Primary care physicians are usually happy to continue seeing their patients in their office or will make home visits (or visits to a particular residence) if plans are set up in advance and travelling distances are reasonable.
Hospices also work closely with the primary physician. The continuation of the patient-physician relationship is a high priority. Since losing a doctor who has treated someone for many years, including through the stages of a terminal illness, can cause a lot of stress and anxiety for some patients, it is almost always in the best interest of the patient to allow them to see their personal doctor while in hospice care.
Entering Hospice Care
Hospice care can be provided at home, but it is also available at some hospitals, nursing homes, assisted-living facilities, and dedicated hospice facilities. Depending on the level of medical support and assistance you require, some hospices may be more suitable than others.
The National Hospice and Palliative Care Organization is a good starting place when looking for facilities that provide dedicated hospice care. The organization’s website gives information on the requirements, frequently asked questions about hospice care and has a search tool to look for hospices in your area.
Keep in mind that no matter where hospice care is provided, it may sometimes be necessary to be admitted to a hospital. For instance, if a symptom can’t be adequately managed by the hospice care team in a home setting, a hospital stay might be called for.
Paying for Hospice Care
Since hospice care often comes after a long period of treatment for a terminal disease, many people are understandably worried about the costs. The good news is that cancer patients and others have several options to help them pay for hospice care.
Medicare: For individuals over the age of 65, hospice care is covered under a specific Medicare Hospice Benefit, meaning that if you are eligible, you will only be responsible for any deductible and coinsurance (as well as the premiums you currently pay).
Medicaid: For those who are eligible for Medicaid benefits, some states offer hospice plans. Since the hospice benefit is optional, it may not be available in every state.
VA Benefits: The Department of Veterans Affairs offers certain benefits to qualified veterans for hospice care. These benefits are part of the standard VA medical benefits package and there is no copay.
Private Health Insurance: Many health plans provided by private insurance companies provide hospice benefits. Patients who have private insurance through an employer or another avenue should check with their provider to determine the criteria and coverage for their plans.
In addition, mesothelioma patients may have other financial options to help them pay for hospice care.
Signs You May Be Ready for Hospice Care
The American Academy of Hospice and Palliative Medicine has put together a list of signs that a patient may be ready for hospice care. These include:
- You’ve made several trips to the emergency room, and your condition has been stabilized, but your illness continues to progress.
- You’ve been admitted to the hospital several times within the last year with the same symptoms.
- You wish to remain at home, rather than spend time in the hospital.
- You are no longer receiving treatments to cure your disease.
If you or a loved one fits these criteria, you may want to consider talking with your medical team to discuss the best approach for you.