By Cheryl Arenella, MD, MPH
According to a Harris Survey on End-of-Life Care conducted in 2002, the vast majority of Americans (86%) believe that people with terminal illness would most like to receive end-of-life care at home. Yet nearly 70% of deaths in America today occur in facilities, primarily in hospitals and long-term care facilities.
Given the overwhelming desire of Americans to die at home, what are the reasons for the gap between what Americans prefer and what is actually taking place? In this article, we will examine one of the factors responsible for the gap: our trepidation for caring for a severely ill person at home.
Caring for a seriously ill loved one at home can be intimidating and overwhelming. Most of us have no experience or training in caring for an ill person at home. Adding to our sense of overwhelming responsibility is the rapid advance of technology, which has made the array of home-based medical interventions bewildering.
There is little doubt that, when families commit to caring for a seriously ill loved one at home, they face many challenges. These families could benefit from additional support, especially the comprehensive, holistic support offered by hospice. Concerns often arise in three broad categories:
- Safety and autonomy issues
- Personal care issues
- Medical care issues
Safety and Autonomy Issues
How can I make my home safe for my ill and frail sister?
Much as you would if a toddler were coming for a visit, do a safety inventory of your home, but tailored to the needs of your loved one:
- Remove scatter rugs to prevent trips and slips.
- Remove obstacles from areas where your loved one might walk to prevent falls.
- Place grab bars in the tub and next to the commode.
- Use raised toilet seats and non-skid shower seats.
- Be sure that your loved one has well-fitting shoes with non-skid soles.
- Floors should have a slip-resistant finish.
- Electric cords should be properly secured well away from areas where your loved one might walk.
- Be sure emergency contact telephone numbers are posted prominently.
- Observe good hand-washing routines before and after providing hands-on care.
The hospice nurse, home care nurse, or an occupational or physical therapist can assist you with this evaluation and help plan appropriate modifications. The nurse will instruct you in proper hand-washing technique.
My mother lives alone and insists on maintaining her independence. But I worry about her constantly!
While this situation may not be ideal from the viewpoint of the concerned family member, there are steps that can be taken to increase your loved one’s safety, while allowing autonomy as long as possible:
- There are many services that will supply your loved one with an electronic alert device that can be worn and which, when pressed, summons help.
- Set up a network of concerned individuals among friends, neighbors and family that live close by that can be called upon to check in with your loved one at routine intervals and be available for emergencies.
- Supply your loved one with pre-prepared meals, or arrange for meals to be delivered by services such as “Meals on Wheels.”
- If daily personal care is a challenge for your loved one, home health aides can provide hands-on care, under the auspices of hospice or a home health agency or hired privately.
- Is your loved one hard of hearing? Arrange for a hearing exam and appropriate hearing aids.
- Is decreased vision a problem? Be sure corrective lenses are up-to-date.
- If your loved one does not wish to be resuscitated, be sure that you follow your state’s regulations about how to notify emergency health care workers, hospitals and health care providers of this. Some jurisdictions require special “DNR” (do not resuscitate) forms to be filled out and prominently displayed in the home to prevent the initiation of cardiopulmonary resuscitation in the event that the emergency squad is called to the home to assist your loved one.
A hospice social worker or eldercare case manager can help to assess needs and create a safe environment for your loved one.
My father is confused. He turns on the stove, wanders, and does other unsafe things if he is not constantly monitored.
Caregivers of persons with Alzheimer’s disease and other dementias have learned to be creative in keeping a loved one safe by such techniques as:
- Camouflaging exit doors by curtains so your loved one does not attempt to leave.
- Using combination locks on doors.
- Removing stove knobs when the stove is not actively being used.
- Ensuring that a loved one has an identification bracelet with his/her name, address, and the name and telephone numbers of key contacts. If he/she does wander, the chance of a safe return is maximized.
- Keeping a consistent daily routine.
Personal Care Issues
My husband is weak, and it is hard to help him out of bed, into and out of chairs, on and off the commode, and into and out of the tub.
- There are transfer techniques that can be used to keep both you and your loved one safe. The hospice nurse, home health nurse or the physical therapist can train you in these techniques.
- Perhaps your loved one could benefit from physical or occupational therapy for strengthening, coordination and balance.
- Stairs can be fitted with mechanical stair lifts.
- Some chairs (called “lift chairs”) have mechanical lifting capability to boost a loved one to a standing position.
- A physical therapist can evaluate your loved one for the possible use of assistive devices, such as walkers, transfer boards or patient lifts.
My grown daughter can’t even get out of bed! How can I bathe her, change her, and change the bed with her in it?
Again, techniques have been developed to help you safely tend to your loved one’s care needs, even when he/she is bed bound. The hospice nurse or home health nurse can teach these to you.
How can I be sure my aunt is eating enough?
Many frail, chronically ill persons have diminished appetites. Serving normal sized meals can be a “turn off” for them. Instead:
- Try small, frequent servings of preferred foods.
- Encourage your loved one to drink small amounts frequently.
- Avoid foods or drinks to which your loved one may have developed an aversion to either the taste or the smell.
- Don’t force your loved one to eat. This will likely make him/her nauseous.
A dietician can help you evaluate what the best meal plan is for your loved one. At times, nutritional supplements in the form of shakes or puddings may play a role.
Medical Care Issues
My husband is on so many medications, it is so hard to keep them all straight!
- First, see if your loved one’s doctor can simplify the medication regime. As the goals of care shift from control of disease and prevention of possible future medical conditions, to promotion of comfort in the remaining days, many medications can and should be discontinued.
- The hospice nurse or home health nurse may have a medication administration sheet that can help you keep track of medication administration, or you can design one yourself.
- Pill-minders, with discrete cubbies for each day of the week and different times of the day, are available at most drug stores.
My father has developed a pressure sore on his lower back. I don’t know how to care for it!
The best care plan for management of pressure wounds is to prevent them:
- Turn your loved one in bed every couple of hours.
- Keep your loved one’s skin surfaces clean and dry.
- If your loved one is incontinent, change his/her adult diaper as soon as possible after it becomes wet or soiled.
- Pressure reduction pads and mattresses are available for beds and chairs.
In the event that a pressure ulcer develops:
- The hospice or home care nurse can show you how to cleanse the wound and how to change the specialized dressings regularly.
- An upgrade of the pressure reduction surface or a specialized pressure reduction bed may be needed for a time.
My wife has what they called a “central intravenous catheter” in her upper chest. It has special bandages and requires special care. I’m worried that I’ll break it, or cause an infection.
Family members can be taught how to safely care for the site of an intravenous catheter. The hospice or home health nurse can instruct you in the proper techniques.
My son has a urinary catheter (a tube placed through the urethra into the bladder). How do I care for it?
The hospice or home health nurse can show you how to:
- Keep the area where the catheter is inserted clean.
- Empty the catheter bag.
- Recognize the signs of urinary infection that can sometimes be caused by an indwelling catheter.
My grandfather is fed through a gastric feeding tube. How do I set it up?
The hospice nurse or home health nurse will show you:
- Proper positioning of your loved one (usually in a sitting or propped up position) before beginning the feeding, during feeding and following the feeding for a period of time.
- Proper storage of feedings.
- The appropriate amount and type of feedings.
- How to administer feedings, if they are “gravity fed” (coming through the tube into the stomach through force of gravity).
- How to hang the feedings, thread the tubing through the pump, set the pump rate, and start and stop the pump, if the feedings are administered through a pump.
- How to keep all equipment clean.
There may come a time when your loved one no longer wants, or can no longer tolerate, the tube feedings. The hospice team, including the nurse, social worker and chaplain, can help prepare you for this time, and help you continue to keep your loved one comfortable even after the tube feedings are stopped.
My spouse has a colostomy bag. It’s kind of gross. I’m not sure I can handle it!
Many people find that, when it comes to caring for a loved one, tasks that at first seem objectionable become manageable. Just as we care for our infants with love, no matter what the task at hand, we can also care for our older loved ones with special care needs.
The hospice nurse or home health nurse can teach you how to:
- Care for the colostomy site.
- Empty the colostomy bag.
- Change the colostomy bag.
My sister has a tracheostomy tube in her throat to breathe, and she needs to be suctioned through it frequently to keep the tube clear. I can’t do that, can I?
Family members can indeed be taught how to suction mucus and secretions from a tracheostomy tube. In fact, family members often become more “expert” in suctioning a loved one’s trach than the health care professionals, since the family member becomes, in essence, a “specialist” in the care of their loved one.
The nurse or respiratory therapist can teach you how to:
- Use the suction catheter to suction secretions from the tracheostomy tube.
- Cleanse and care for the trach stoma (the opening in the neck through which the tube enters the throat).
- Cleanse and care for the tracheostomy tube and cannula.
- Operate and care for the suction machine.
My mother’s last wish is to die at home, but she is on a ventilator. What can we do?
With careful planning, it is possible to take a loved one home from the hospital on a ventilator. The hospital will have to work closely with the hospice or home health agency as well as with the durable medical equipment company that provides the in-home ventilator.
- The company that will provide the in-home ventilator will do an assessment of your home to be sure that your home will successfully accommodate the ventilator (which has specific space and power requirements).
- A back-up generator will need to be in place, in case of a power outage.
- You will be instructed in advance about the operation of the ventilator, as well as any special care needs of your loved one.
- Your loved one will need frequent visits from the nurse, and perhaps from the respiratory therapist, to be sure all goes well.
- A plan needs to be in place in the event that your loved one develops trouble breathing. This plan should address the following questions:
– Will your loved one want resuscitation?
– Should 911 be called?
– Can a nurse come to the home urgently at any hour?
– Are there medications or treatments that should be available to administer if your loved one becomes distressed?
Many, but not all, hospices will accept ventilator-dependent patients. Most hospices provide urgent care nurse visits on a 24-hour basis. The hospice interdisciplinary team is skilled in advance care planning, as well as in anticipating future care needs to keep your loved one comfortable.
My friend can no longer eat or drink. Won’t he suffer from thirst and hunger? How can I keep him comfortable?
When death is near, a person commonly loses the ability to swallow and can no longer eat or drink. Hunger does not generally occur in this situation. Observe the person for any signs of discomfort and notify your health care team if discomfort occurs. A dying person can be kept comfortable by:
- Moistening lips, tongue and mouth frequently with water, ice chips or artificial saliva. This prevents thirst.
- Moistening and gently massaging the skin with cream.
- Keeping the eyes moist with saline (salt water) eye drops.
- Turning the person gently and moving limbs gently.
The hospice interdisciplinary team has expertise in managing pain and other distressing symptoms. A recent national survey found that caregivers supported by hospice were more satisfied with the end-of-life care given their loved ones than those who were supported by home health agencies, nursing homes, or hospitals.
Increasingly, complicated, advanced medical care is capable of being delivered in the home setting. The responsibility for this care often falls on the shoulders of loved ones. However, programs such as hospice, home care, caregiver support networks, and educational resources are available to those who accept the challenge to allow loved ones to die at home, where most want to be. The experience, though never easy, is often rewarding for those who undertake it.
About the author: Dr. Cheryl Arenella does health care consulting for programs focused on improving end-of-life care. She has over 20 years of experience in the field of Hospice and Palliative Medicine. She is a former trustee of the American Board of Hospice and Palliative Medicine and served for many years as a Medical Director for a large Medicare certified hospice, where she provided medical oversight, direct patient care and administrative program support.