Myths about hospice care
By Chantelle Goodman
Chantelle Goodman is a British-trained registered nurse who has had experience in neonatal and pediatric intensive care units in Europe, Africa and North America. For the past six years, she has been working at Healthkeeperz Hospice as the clinical hospice liaison. Goodman said she has a passion for educating people about what she sees as myths and misconceptions about hospice care, also known as comfort care and palliative care. “These misconceptions often cause people and their families to severely delay receiving those services in a timely manner,” Goodman said. Below are the concerns she says she often hears.
Myth: Hospice means you have only a few weeks to live. It’s the end.
Reality: When a doctor orders comfort care for a patient, he is making an educated medical guess – based on the physical signs of decline – that the patient will not live beyond a six-month period of time.
In reality, a good number of our patients are with us for many months – sometimes for more than a year. It isn’t uncommon for patients to stabilize or even improve under hospice care. We believe patients and their families benefit from receiving hospice care earlier rather than later.
Myth: They’re going to put me in a corner and leave me to die.
Reality: Not so. A major goal of the hospice team is to improve the quality of life for the patient and his or her family. Patients are encouraged to go out and enjoy time with their family and friends if they’re physically able.
Freed from frequent, tiring visits to the hospital and the emergency room, many patients feel more rested and have more energy to enjoy their families than they otherwise would.
Patients don’t have to be “home-bound” to receive comfort care. But if a patient is at home, we encourage placing a hospital bed in a living room, instead of a closed bedroom, so the patient can be involved in the life of the family.
Myth: They’re going to dose me up on morphine.
Reality: Morphine is often used only at the end of life, if at all. Hospice physicians have several types of medication to choose from for pain relief and they select what’s most appropriate. Some people don’t require any pain medication. The hospice goal is to keep patients pain-free and also as alert as possible so they can enjoy family time and make memories.
Myth: I’ll have to leave my home and go to a “hospice” place.
Reality: Most patients receive hospice care in their own home, whether it’s the family home where they’ve lived for years or a nursing home or assisted living facility to which they’ve moved. Most people prefer to be at home at this time so they can be surrounded by family, friends, pets and belongings. Some communities do have a “hospice house” but these are generally places where a patient can choose to go for the last week or so of life if they don’t want to stay at home.
Myth: I don’t have cancer so I don’t need hospice.
Reality: Most hospice patients have non-cancer diseases. Medicare has a hospice benefit that covers an array of professional services for patients with a qualifying disease that is deemed by the patient’s doctor to be in its end stage. Some examples of qualifying diseases are congestive heart failure, chronic obstructive pulmonary disease (COPD), emphysema, coronary artery disease, Alzheimer’s disease, vascular dementia, protein calorie malnutrition (formerly known as adult failure to thrive), Parkinson’s, stages 4-5 kidney/renal disease, liver disease, HIV/AIDS, diabetes, strokes, multiple sclerosis, lupus and ALS (Lou Gehrig’s disease).
Myth: Hospice won’t treat me for anything and they’ll take all my medications away.
Reality: If you choose hospice care, you will still receive treatment for your health conditions but you will not receive aggressive medical treatment for your terminal disease. You must agree to this if you elect to receive Medicare’s hospice benefit. But you can change your mind and revoke the benefit so you can pursue aggressive treatment. You can later elect to receive the hospice benefit again.
In hospice care, you will receive comfort care for your terminal disease. If you get an infection, you will be treated by antibiotics by mouth in the home. If you fall and break a bone you will be sent to the hospital for treatment. Any symptoms from your terminal disease that give you discomfort or make you feel unwell will be treated in the home.
Meanwhile, if you suffer from other conditions other than the terminal disease for which you are receiving hospice care, you can still receive aggressive treatment for them. For example, a patient receiving hospice care for end-stage COPD might also have kidney/renal disease and high blood pressure. He couldn’t aggressive care for his COPD while also receiving hospice care but he could receive aggressive treatment for his kidney disease and high blood pressure.
As for a patient’s medications, these are reviewed by the hospice doctor. Patients are kept on the most appropriate medications that benefit them. Many elderly people suffer polypharmacy, which means they are taking too many medications, prescribed by a number of specialists, and these medications may be causing them adverse effects and drug interactions.
Myth: I won’t be allowed to go to my primary-care doctor or to any specialists.
Reality: You can still see your primary-care physician for any of your medical issues, including your terminal disease, while you’re under hospice care. You can’t seek treatment from a specialist for your terminal illness but you may see any specialists you like for other reasons.
Myth: Choosing hospice means I have to give up hope.
Reality: Nobody can tell you to give up hope but the focus shifts to hoping to live each day to the fullest with your loved ones, and to creating memories.
The true gift of hospice is its ability to support families in the personal and spiritual connections they make with each other at this time and which may not have been possible if they had been focused on aggressive treatment. This provides the honor of a peaceful death and better memories for those left behind.
Myth: I will die more quickly if I accept hospice care.
Reality: Hospice care is designed to neither prolong nor hasten death but to concentrate on making the quality of life for the patient and their family the best it can be in the final months, weeks or days.
Myth: I have to have a DNR (Do Not Resuscitate) code status to be in hospice.
Reality: Not true. People have the right to choose whether they will receive CPR in the event of cardiac or respiratory arrest. But the only way to guarantee a home death without potentially traumatic extra measures is by having a DNR in place.
When is the right time to accept hospice care?
When a person’s body is naturally coming to the end of its life there are signs that it is time for comfort care. Some of the signs might include: weakness, sleepiness during daytime, urine infections, falls, needing oxygen (or more of it), poor appetite, weight loss, inability to bathe/dress/transfer/feed oneself, inability to walk alone or without assistance, incontinence of urine or bowels, more frequent ER or hospital visits for the same problem or problems, new or worsening bedsores, pneumonia, shortness of breath when moving or with speech, choking on food or fluid, swollen feet and /or legs despite “water” pills.
What’s so great about hospice anyway?
Having a nurse on call around the clock is gold. That is hospice care. To have a CNA (a certified nursing assistant) relieve a family member a few times a week to bathe and dress their loved one is gold. That is hospice care. To have a social worker to lean on for support before and after death, a chaplain for spiritual support, a volunteer to spend time with your loved one and a physician to visit you at home occasionally is also gold. That is hospice care. Receiving some medications, medical equipment and supplies that you might otherwise have to pay for is also gold. It’s a huge service and that is why I love my job.
I come across people daily who have been suffering aggressive medical care that does not change their outcome or ‘the big picture’ and they just want to rest and have peace and quiet and hospice care provides that precious time with their families. It is a total privilege to be a part of it.