There has been a call for more compassion in medical treatment in the United States for what seems like decades. The healthcare industry has often been accused of caring more about finances and the bottom line than its patients. While there may be some merit to the accusation in certain quarters, the medical professionals who have dedicated their lives to helping others should be beyond reproach. However, in this ultimate guide to compassionate care for patients, we will be referring to a very specific branch of medicine.
What Does Compassionate Care Mean?
Compassionate care relates to both medical and emotional care for people with terminal diseases, and is also sometimes known as hospice care. Sadly, nothing can be done to alleviate the patient’s condition at this point, but medical professionals can still help make their lives more comfortable even though future treatments have been deemed fruitless.
According to the National Hospice and Palliative Care Organization (NHPCO), the Centers for Medicare and Medicaid Services (CMS) paid almost 4,200 hospice centers to provide care under Medicare’s hospice benefit program in 2015. Over 1.3 million Americans are receiving compassionate care each year, with cancer accounting for over 27% of patients.
As it involves caring for patients in their final stages of life, the private medical treatment they receive typically involves reducing pain and ensuring specific symptoms are more manageable. Aside from dedicated hospice centers, patients also have the option to receive care in their home.
Other important aspects of compassionate care include spiritual counseling and psychological support. These services are arguably the most important aspect of hospice care because they attempt to mentally prepare patients who have just received the worst possible news.
Regardless of its inevitably gloomy nature, terminal care has improved greatly in the last few years. In July 2017, the Compassionate Care Act was signed into law in New York State, following in the footsteps of states such as California. However, the list of compromises in the bill shows that the issue of compassionate care is still not receiving the attention it deserves.
One of the things the Bill stated is that residents of New York are allowed access to cannabis if they had one of 10 potentially terminal diseases (such as multiple sclerosis, Parkinson’s or ALS). The problem is, insurance doesn’t cover medical marijuana so low-income houses will have a problem paying for medical marijuana. Also, there were only 20 dispensaries in New York state at the time of the Bill being signed, which means thousands of patients will have to travel for hours to reach a dispensary.
Why Should People Care About Compassionate Care?
A fully working compassionate care program has often been cited as the “forgotten factor” in healthcare reform. It is easy – albeit incorrect – to assume that palliative care is irrelevant because the patient in question has little time to live. However, research by Kostovich and Clementi, published in the Journal for Nurses in Professional Development, found that patient outcomes improved when receiving treatment from nurses, either at a compassionate care center or at home.
This form of private medical treatment ensures that patients feel cared for and respected. The study also showed that patients believed nurses had their best interests at heart. It is a fact that when patients are relaxed, they spend less time in the hospital, they benefit from reduced anxiety and pain, and they have a more optimistic outlook.
What Medical Treatment Will Patients Receive in a Compassionate Care Program?
Too many Americans pass away in a facility receiving care that is not in line with their wishes. When you plan for end-of-life care, you have several options. For example, you can choose a form of care that involves receiving treatment from physicians for as long as possible in the hope of finding a cure.
Compassionate care, on the other hand, can take place in a hospice or a private residence, and is for patients who have effectively passed the medical crisis stage and are aware that there is nothing that can be done to cure their condition. The patient knows that his/her illness is not responding to treatment methods, and decides to prevent future attempts at treatment.
This form of care is specifically for individuals diagnosed with terminal illnesses, and who have six months or less to live. As the term ‘hospice’ is an approach to care, it is not actually tied to a specific location. For those with terminal illness, you have the following end-of-life options:
- Hospital: You will receive 24/7 medical care from a team of professionals. It has been estimated that around 60% of Americans die in an acute care hospital, while 20% of Americans pass away in an Intensive Care Unit (ICU).
- Nursing Home: There are over 15,000 nursing homes in the United States, with a total population around 1.6 million.
- Hospice: This is the main option for patients seeking compassionate care. A hospice center offers palliative and pain management care for terminally ill patients, and it is estimated that over 80% of Americans aged 65+ with a terminal illness will receive some level of hospice care.
- Your Home: While 80% of Americans say they would prefer to die at home, statistics have shown that only about 20% actually do. If you go down this route, a lot of planning is required because you need special equipment and professional nursing care, neither of which is cheap.
When you choose a hospice center, please note that a family member still acts as your primary caregiver and can help make medical decisions on your behalf when appropriate. Hospice staff members are on call 24/7, and will make regular visits to you and provide additional care if necessary.
Typically, a hospice team will develop a care plan to meet your specific needs for symptom control and pain management. The team usually consists of:
- Your personal physician.
- A hospice physician.
- Home health aides (if applicable).
- Social workers.
- Trained volunteers.
- Occupational, physical, and speech therapists.
Among its many services, a compassionate care team will generally provide the following:
- Pain and symptom management.
- Assistance with the emotional and spiritual aspects of dying.
- Advising your family on how to care for you.
- Providing you with the necessary equipment, drugs, and medical supplies.
- Offering bereavement care to your surviving family and friends.
- Delivering special services if requested; examples include physical and speech therapy.
Spiritual Counseling is a Must
Spiritual counseling is an often-overlooked aspect of compassionate care, but it helps separate it from traditional hospital care. The term ‘spirituality’ is a broad one, but it relates to thoughts and feelings about our purpose and where we’re likely to go once our life on earth concludes. You don’t necessarily need to belong to any particular denomination of faith to benefit from this sector of hospice care.
As you draw closer to the end after a terminal illness diagnosis, it is only natural to question some of your long-held beliefs and/or your individual philosophy. While it is relatively common for a person in hospice care to find religion in their final days, the general idea behind spiritual counseling is to help you draw strength from practices such as mindfulness, meditation, and mantras.
If you don’t receive this type of counseling, you may feel a sense of spiritual pain which essentially means you lose a sense of meaning or purpose in your life. It is normal to begin reflecting on your life, and distressing emotions or feelings such as fear, anger, and regret are often common. It is also possible that you have unresolved issues with family and friends that spiritual counseling could help overcome.
Here are some common signs of spiritual pain:
- A feeling that you are in a hopeless situation and there is no point to your existence.
- Profound loneliness.
- A belief that you have become a burden to your loved ones.
- A feeling that you no longer know ‘who’ you are.
- A desperate desire to make amends to people you have wronged.
The best compassionate care centers will feature a spiritual counseling program, and should be staffed by a multidenominational team to support as many faiths and philosophies as possible. Each team member should have a spiritual counseling certification, if applicable.
However, it is important to note that these individuals won’t necessarily have answers to your questions. Rather, a spiritual professional will patiently listen to your beliefs without imposing their own. This form of care is known to provide comfort to patients in their final days.
Getting the Best Psychology Support from Experts
Psychology today is at an advanced enough level to deal with the inevitable emotional distress felt by individuals diagnosed with terminal conditions. As well as handling the patient’s needs, positive psychology can benefit their loved ones. By talking openly about the dark thoughts inside your mind with a trained professional, you can alleviate some of your psychological burdens.
Bereavement support is a crucial service offered by hospices. It helps counsel and support bereaved family and friends, and those who are close to losing a friend or loved one because of poor health. You have the option to see such a counselor by yourself, or you can invite your family to join you. Services sometimes include the use of arts and creativity, so sessions aren’t necessarily a case of simply sitting down and talking.
Can Marijuana Help with End of Life Care?
When you begin to receive compassionate care, whether at a hospice or in your home, you’ll begin developing a variety of coping mechanisms as you try to come to terms with your terminal condition. As you probably have just a few months to live, your disease will have taken firm hold which means you will experience a raft of physical and mental changes. These can include:
- Loss of Appetite: While some illnesses cause a loss of appetite and drop in weight, the mental stress of the condition may also ruin your appetite.
- Fatigue: As you process your feelings of sadness over your condition, your body is likely to produce a reaction similar to ‘fight or flight’. This could lead to severe fatigue, anxiety, depression, and absent-mindedness.
- Depression: Psychological distress is common in a person’s last few months. Once you realize that the end is coming, you will feel spiritually, cognitively, behaviorally, emotionally, and physically distressed.
- Pain: In most cases, you will begin experiencing greater levels of pain than before as your body desperately tries to fight back, but fails to do so.
The use of marijuana, especially strains that are high in CBD, is growing in hospices but most facilities still prefer to treat patients in the following ways:
- Pain medications such as Steroids and NSAIDs.
- Laxatives and stool softeners (one of the most common side effects of the medicine you’ll receive is constipation).
- Anxiety medications to help treat the stress and depression you may feel.
- Anti-nausea medications (especially common in cancer patients).
The purpose of compassionate care is to help control a patient’s pain and symptom levels. As such, end-of-life care is more about the ‘human’ experience than the ‘medical’ one. There are hundreds of studies that show how effective marijuana is when it comes to relieving pain and nausea in terminal patients. Its anti-inflammatory properties alone will likely help relax you, and THC-laden strains have also been known to increase appetite.
The main issue faced by proponents of marijuana for compassionate care is its federally illegal status. Scientists are unable to perform double-blind studies on the effects of marijuana, and it is still banned in 21 states. It is hard to believe that the federal government would forbid the use of marijuana in dying patients, but a few politicians are trying hard to make the powers that be see more clearly. Back in 2011, a study by Uritsky, McPherson, and Pradel found that hospice care providers were ‘generally’ in favor of legalizing weed for patients with terminal illnesses, as many of them have seen first hand how cannabis use can improve their quality of life.
Marijuana and Terminal Illness: Try it and See
In 2016, 70-year old Ernestine Coon was diagnosed with ovarian and uterine cancer. Doctors told her she had 18 months left to live, and after a chat with close friends, she decided to try cannabis for the first time in her life.
With six months left to live, she began having constant pain in her back and abdomen. Then, she agreed to sign up for the first federally approved trial on cannabis medication, which was a study to see if weed could help reduce pain in terminally ill patients to the point where they no longer needed opioids.
The study began in May 2017, and Ernestine used cannabis while enrolled in The Connecticut Hospice. The trial was to run for a year, so it should actually be close to a conclusion by the time of writing (May 2018). Its goal was to enroll 66 patients with a terminal illness who were still capable of consuming capsules containing weed.
Wen-Jen Hwu was one of the study’s designers, and the Yale School of Medicine graduate is adamant that traditional drugs do nothing but make patients feel lethargic. Constant doses of narcotics also kill appetite, resulting in nausea, vomiting, and feelings of confusion.
Hwu believes that cannabis can reduce the number of opioids consumed by terminally ill patients, and most importantly, he genuinely believes that marijuana will make people feel better. When you use CBD or cannabis, you should feel your level of pain diminish significantly, and there are thousands of studies to back up that assertion.
Eligibility for Care Programs
Entities such as Medicare, Medicaid, and health care programs that are sponsored by the Department of Defense and Veterans Administration typically pay around 85% of end-of-life costs. And for the record, Medicare pays over 83% of hospice costs (more than 80% of Americans are Medicare beneficiaries at the time of their death).
Medicare Hospice Care
Medicaire’s Hospice benefit was introduced in 1983, and it pays for hospice care and caregiving services to patients with a serious illness – if their doctor has certified that he/she has six months or less to live. You also have to agree to forego potentially curative or life-saving treatment, and finally, you must have Medicare Part A coverage. The program’s coverage includes a wide range of services including:
- Inpatient Care.
- Nursing Care.
- Physician Services.
- Bereavement Services for Families.
- Medical Social Worker Services.
- Physical and Occupational Therapies.
- Medical Appliances & Supplies.
- Hospital Aide and Homemaker Services.
- Speech-Language Pathology Services.
On the Medicare program, you are covered for two 90-day periods in a hospice center, followed by an unlimited number of 60-day stays. Your physician must re-certify that you have six months or less to live at the beginning of each care period.
Although the program’s hospice benefit covers many of the costs related to a terminal diagnosis, it does not cover the following:
- Accommodation: Your room and board charges are not covered if you live in a long-term care facility such as a nursing home.
- Curative Treatment: You are not covered for costs associated with any medication or treatment designed to try and cure a terminal illness.
- Inpatient Respite Care: You are responsible for paying 5% of the Medicare-approved amount of Inpatient Respite Care coverage.
- Skilled Nursing Care: You are not covered for any day where you received skilled nursing care such as occupational or physical therapy, and wound care.
All care you receive from the Medicare Hospice Care program must be provided/arranged by a hospice organization you select. However, you can still name your primary care physician as your attending doctor and he/she can collaborate with your hospice care team.
You will pay a maximum of $5 per prescription drug designed for symptom control and pain relief. You must also pay 5% of the Medicare-approved amount for inpatient respite care.
Medicaid Hospice Care
As is the case with the Medicare program, patients are eligible if they have been diagnosed with a terminal illness and a certified doctor has issued a prognosis saying you have six months or less to live. You can use this benefit alongside your existing Medicare coverage. Although there are slight state-by-state differences regarding Medicaid hospice eligibility requirements, most locations require the following:
- You must complete an election form where you agree to receive hospice care.
- You must agree to end curative treatment (this step does not apply if you are under the age of 21).
- You must bring a signed certification of terminal illness issued to you by a physician.
- Your physician must state that you have a reduced life expectancy every time he/she certifies your eligibility.
Services covered under the Medicaid Hospice program include, but are not limited to:
- Hospital Nursing Care
- Hospital Physician Services
- Respite Care
- Bereavement Counseling
- Chaplin Support
- Social Worker Services
- Medical Equipment and Supplies
The set of restrictions on Medicaid are the same as on Medicare. Hospice services are 100% covered with no out-pocket costs for you or your loved ones.
Private Insurance Plans
Although most patients are eligible for Medicare or Medicaid hospice services, you have the option of paying for a private insurance plan to provide additional comfort. By doing so, you protect yourself and your family from the total cost of medical expenses. You will need to choose a plan that covers Hospice Care and other End-of-Life services. While such plans are supposed to offer 100% coverage, we recommend that you carefully read the fine print for exceptions.
While private companies have their own set of eligibility criteria, almost all of them follow the Medicare/Medicaid stipulation that you must be diagnosed with a terminal illness and have six months or less to live. The kind of hospice care services included on a private plan vary, but normally include the following:
- Medication prescribed by your physician designed to manage control and pain symptoms related to your diagnosis.
- Short-term respite care for a maximum of five days at an inpatient care facility.
- Short-term inpatient care if it is required to manage the symptoms related to your terminal diagnosis.
- Medically necessary supplies such as wound care supplies, catheters, and incontinence equipment.
- Medical equipment related to the terminal diagnosis including walkers, hospital beds, and wheelchairs.
- A team of skilled medical professionals such as chaplains, social workers, hospice aides, nurses, and physicians.
Please note that Medicare and Medicaid do not cover the use of CBD or any other cannabinoid used during your hospice care period, even in states where it is legal. You will not find a private insurer that covers weed use either. On a private insurance plan, you have to remember that there are co-payments and deductibles to pay, so it is important to plan your expenses.
Individual hospices have their own eligibility criteria based on your medical condition. For example, a hospice may deem you eligible if you meet one of the following criteria:
- Progressive weight loss.
- Recurrent Infections.
- Skin Breakdown.
- A change in functional and cognitive abilities.
- Frequent hospitalizations in the last six months.
- Increasing fatigue, weakness, and somnolence.
There may also be disease-specific requirements for hospice care including:
- Liver Disease.
- Renal Disease.
- COPD/Cardiopulmonary Disease.
- Cerebral Vascular Accident (CVA)/Stroke.
How a Marijuana Card Can Help You During the Final Stages of Life When You Are on Compassionate Care
Unfortunately, if you live in a state where marijuana is still illegal, you are unable to use cannabis during compassionate care. If you live in a state where cannabis is legal for medicinal use but not recreationally, you will need a medical marijuana card to use weed legitimately. Be sure to check your state’s laws regarding medical marijuana use because they vary significantly. For example, marijuana is completely illegal in Kansas, while you can only use CBD oil in Kentucky.
In states such as Montana, Vermont, and New Mexico, medical marijuana use was specifically approved for individuals under hospice care. A significant number of states now allow the use of cannabis for chronic pain, including Arizona, Delaware, Hawaii, and Maryland.
If you are legally allowed to use medical marijuana while in compassionate care, it may be worth trying. There are dozens of studies which show that it can help manage symptoms such as nausea, chronic pain, anxiety, insomnia, and loss of appetite which typically accompany people with terminal illnesses.
Studies have also shown that individual cannabinoids such as THC and CBD are capable of managing pain at least as well as opioids, and marijuana is far less addictive and causes fewer negative side effects. THC, in particular, improves the quality of sleep as users report waking up fewer times during the night.
However, even if you live in a state where medical marijuana is legal, there is no guarantee that the hospice you choose will allow its use. At the time of writing, the National Hospice and Palliative Care Organization does not have an official position on weed use. Instead, it decides to leave the decision in the hands of your physician. While you are likely to find a sympathetic doctor in California or Colorado, it is not a guarantee in states with a history of fighting against marijuana legalization.
It is a sad situation when a terminally ill person is not allowed access to medical marijuana. Even leaving aside all notions that it is harmful, if the person who wants to use it only has six months left to live, what possible damage can it do? There are more than enough studies that show it is a relatively safe treatment capable of significantly reducing pain, so therefore denying a patient access to it is downright cruel.
Robert Cole of the Hospice of the East Bay in California said that “cannabis is a remarkable drug that does not produce some of the negative effects of opioids.” He went on to say that its potential as an analgesic has to be researched thoroughly. Sadly, though, as long as marijuana remains illegal on a federal level, researchers will be unable to conduct crucial clinical double-blind studies. Until that day comes, it seems almost certain that we will continue to go down the same rabbit hole. Worst of all, it appears that the people in terrible pain with not much left to live for will be the ones that suffer, along with countless others.