Compassionate care relates to both medical and emotional care for people with terminal diseases. It is sometimes known as hospice care. Sadly, medical professionals can do nothing to alleviate the patient’s condition at this point. However, they can help make patients’ lives more comfortable.
An estimated 1.3 million Americans receive compassionate care each year. Cancer patients account for over 27% of this figure.
Treatment usually focuses on reducing pain and ensuring specific symptoms are more manageable. Aside from dedicated hospice centers, patients also have the option to receive care in their homes.
Other important aspects of compassionate care include spiritual counseling and psychological support. These services are arguably the most important aspect of hospice care. 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 2014, New York state policymakers signed the Compassionate Care Act. This piece of legislation signaled the beginning of MMJ in New York.
It is one way for terminally ill patients, though many hospices don’t allow its use. Moreover, insurance doesn’t cover medical marijuana, so individuals with little money will have a problem paying for it.
In this guide, we offer comprehensive detail on the subject of compassionate care.
Why Should People Care About Compassionate Care?
A fully working compassionate care program is often 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, a study published in the Journal for Nurses in Professional Development in 2014 revealed something crucial. The researchers found that patient outcomes improved when receiving treatment from nurses. It happened whether the patient was at a compassionate care center or 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. Other benefits include reduced anxiety and pain, and they have a more optimistic outlook.
What Medical Treatment Do 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. The hope for such patients is to find a miracle cure.
Compassionate care, on the other hand, can take place in a hospice or a private residence. It is for patients who know there is nothing anyone can do to cure their condition. The patient knows that his/her illness is not responding to treatment methods. They decide to prevent future attempts at treatment.
This form of care is specifically for individuals diagnosed with terminal illnesses and six months or less to live. As the term ‘hospice’ is an approach to care, it is not tied to a specific location. For those with a terminal illness, you have the following end-of-life options:
- Hospital: You receive 24/7 medical care from a team of professionals. It is estimated that around 60% of Americans die in an acute care hospital. Also, 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 of 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. An estimated 80% of Americans aged 65+ with a terminal illness will receive some level of hospice care.
- Your Home: Up to 80% of Americans say they would prefer to die at home. However, statistics suggest that only about 20% achieve their goal. If you go down this route, a lot of planning is required. Home care requires special equipment and professional nursing care, both of which are expensive.
Formulating a Care Plan
Please note that a family member still acts as your primary caregiver when you choose a hospice center. They 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. However, it helps separate it from traditional hospital care. The term ‘spirituality’ is a broad one. In general, it relates to thoughts and feelings about our purpose.
For example, we may think about where we’re likely to go once our lives on earth conclude. Therefore, individuals don’t necessarily need to belong to any particular denomination or faith to benefit from this sector of hospice care.
As one receives a terminal illness diagnosis, it is only natural to question some long-held beliefs or philosophies. The general idea behind spiritual counseling is to help draw strength from mindfulness, meditation, and mantras.
If someone doesn’t receive this type of counseling, they may feel a sense of spiritual pain. This essentially means they lose a sense of meaning or purpose in their life. Patients often feel emotions or feelings, such as fear, anger, and regret. It is also possible to have unresolved issues with family and friends that spiritual counseling could help overcome.
Here are some common signs of spiritual pain:
- A feeling of being in a hopeless situation, and there is no point to existence.
- Profound loneliness.
- Feeling like a burden to loved ones.
- An individual’ss feeling of no longer know ‘who’ they are.
- An individual’s desperate desire to make amends to people they have wronged.
The best compassionate care centers will feature a spiritual counseling program. It involves a multi-denominational team working to support as many faiths and philosophies as possible. Each team member should have a spiritual counseling certification, if applicable.
Overall, this form of care could provide comfort to patients in their final days.
Getting the Best Psychology Support from Experts
Psychology could help terminally ill patients to deal with their inevitable emotional distress. As well as handling the patient’s needs, positive psychology can benefit their loved ones. By talking openly about the dark thoughts inside their mind with a trained professional, they can alleviate some of their psychological burdens.
Bereavement support is an important service offered by hospices. It helps counsel and support bereaved family and friends. There is the option to see such a counselor by oneself or invite family to join in. Services sometimes include 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 individuals begin to receive compassionate care, they’ll begin developing various coping mechanisms. It is a normal process as they try to come to terms with a terminal condition. As they probably have just a few months to live, their disease will have taken a firm hold. As a consequence, they will experience a raft of physical and mental changes. These can include:
- Loss of Appetite: While some illnesses cause a loss of appetite and a drop in weight, the condition’s mental stress may also ruin the appetite.
- Fatigue: As one processes their feelings of sadness over their condition, their body will likely produce a ‘fight or flight’ reaction. This could lead to severe fatigue, anxiety, depression, and absent-mindedness.
- Depression: Psychological distress is common in a person’s last few months. Once they realize that the end is coming, they may feel spiritually, cognitively, behaviorally, emotionally, and physically distressed.
- Pain: In most cases, patients will begin experiencing greater levels of pain than before. Their body may desperately try to fight back, but it will sadly fail.
The use of marijuana, especially strains that are high in CBD, is growing in hospices. However, most facilities still prefer to treat patients in the following ways:
- Pain medications, such as steroids and NSAIDs.
- Laxatives and stool softeners. Constipation is a common side effect.
- Anxiety medications to help treat the stress and depression patients may feel.
- Anti-nausea medications (especially common in cancer patients).
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. It is hard to believe that the federal government can forbid the use of marijuana in dying patients. However, a few politicians are trying hard to make the powers that be see more clearly.
A study published in the Journal of Palliative Medicine in 2011 was an eye-opener. It found that hospice care providers were ‘generally’ in favor of legalizing weed for patients with terminal illnesses. Many of them have seen first-hand how cannabis use can improve their quality of life.
Paying for Compassionate Care & Hospice Rules
Entities such as Medicare, Medicaid, and health care programs sponsored by the Department of Defense and Veterans Administration typically pay around 85% of end-of-life costs. Medicare pays over 83% of hospice costs. More than 80% of Americans are Medicare beneficiaries at the time of their death.
Private Insurance Plans
Most patients are eligible for Medicare or Medicaid hospice services. They also have the option of paying for a private insurance plan to provide additional comfort. By doing so, they protect themselves and their families from the total cost of medical expenses.
Individuals will need to choose a plan that covers Hospice Care and other End-of-Life services. Such plans are supposed to offer 100% coverage. However, we recommend carefully reading the fine print for exceptions.
Private companies have their own set of eligibility criteria. Crucially, almost all of them follow the Medicare/Medicaid stipulation that patients must have a terminal illness diagnosis and 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 a physician to manage & control pain symptoms related to the 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 a 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.
Patients can’t use cannabinoids during their hospice care period, even in states where it is legal. They will not find a private insurer that covers weed use either. On a private insurance plan, remember that there are copayments and deductibles to pay. As a consequence, it is important to plan one’s expenses.
Individual hospices have eligibility rules based on individuals’ medical conditions. For example, a hospice may deem someone eligible if they 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
The hospice may also have disease-specific requirements, including:
- Liver Disease
- Renal Disease
- COPD/Cardiopulmonary Disease
- Cerebral Vascular Accident (CVA)/Stroke
Can I Get an MMJ Card When Getting Compassionate Care?
For those who live in a state where marijuana is still illegal, cannabis use during compassionate care is not permitted. For those living in an MMJ state, a medical marijuana card is necessary to use weed legitimately.
Individuals should check their state’s laws regarding medical marijuana use because they vary significantly. For example, marijuana is completely illegal in Kansas, while patients can only use CBD oil in Kentucky.
Among others, Montana, Vermont, and New Mexico passed laws allowing MMJ use for people in hospice care. A significant number of states now permit the use of cannabis for chronic pain, including Arizona, Delaware, Hawaii, and Maryland.
There are a growing number of studies that suggest cannabis could help manage symptoms such as:
People with a terminal illness often have a combination of the above.
Final Thoughts on Compassionate Care & Marijuana
Even in states where medical marijuana is legal, there is no guarantee that specific hospices will allow its use. 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 physicians.
At this stage, it is a case of being lucky with geography. Individuals are likely to find a sympathetic doctor in California or Colorado, for example. However, it is tougher in states with fledgling MMJ laws, let alone places where cannabis is illegal.
It is a sad situation when a terminally ill person is not allowed access to medical marijuana. If a patient only has six months left to live, what possible damage can using cannabis do?
There are many studies that show it is a relatively safe method of significantly reducing pain. Therefore, denying patients access to it seems 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, marijuana remains illegal on a federal level. As a result, researchers remain unable to conduct crucial clinical double-blind studies. It seems almost certain that we will continue to go down the same rabbit hole until that day comes. People in terrible pain with little to live for are the ones that suffer, along with countless others.