By SUSAN SELIGER
Most
of us, when asked about how and where we want to die, answer simply "at
home." Making that happen is not always as simple as it sounds. After a
post in November, "Turning a Home into a Hospital,"
some readers of this blog left comments asking what equipment they
needed on hand and what other steps they needed to take to make that
last wish a reality.
To even begin to answer that, you have to consider two things - not simply the patient's situation, but the caregiver's, too, said Dr. R. Sean Morrison, director of the National Palliative Care Research Center at the Mount Sinai School of Medicine in New York.
"What I see that prevents people from being able to stay at home [to die] is not their medical needs but the needs of their caregiver -- can the caregiver really help, are there resources to help, or is that person going to be overwhelmed?" Dr. Morrison said.
There is professional help available. But before we get to that, here are what specialists say are the most common kinds of equipment and preparations you may need - though, of course, every person's medical and emotional condition is different, as is every person's home.
1. Make room for the bed.
One of the trickiest parts of bringing the patient home is realizing that the bedroom may not be the best place to put the bed, especially if it's located up even a few stairs. "A lot of people put the patient in a family room where there is more space, or the dining room if it's closer to a bathroom," said Dr. Stacie K. Levine, a geriatrician and palliative care physician at the University of Chicago. Or you might consider a room closer to the kitchen - the center of life and activity for most families.
2. Don't forget curtains for privacy.
You can still provide privacy for whichever room you decide to turn into the bedroom by putting up a temporary curtain using a spring pressure curtain rod in the doorway. Especially in the patient's already vulnerable state, a little privacy can go a long way toward preserving dignity.
3. Get tools that keep them moving.
Walkers, four-point canes and slim wheelchairs all help the patient to get out of bed and take part in daily life (and are covered by Medicare). To get the house ready for this new equipment, Dr. Levine cautioned, you will have to remove slippery throw rugs, as well as chairs and other furniture that can get in the way. (See this earlier post and this post for more details on reducing fall hazards at home.)
Changing door handles from knobs to levers can make moving from room to room easier on the patient feeling weak or suffering from painful arthritis.
4. Fix their favorite chairs.
Many patients find that they are just too weak to get up from what used to be their favorite chair. You can buy risers or foam cushions to put on the seats -- or replace a side chair with an armchair -- to give them extra leverage and allow them to stay in their old spots comfortably.
5. Experiment with earphones.
You may need several models to fit into the TV, radio and iPods or tape players so those who are losing their hearing can still enjoy their entertainment, whenever they choose, without disturbing the rest of the household.
6. Make the existing bathroom safer.
"You'll need to install grab bars or benches inside the tub," Dr. Levine said. (Note: Tub benches, costing about $30 to $40, are one of the few things Medicare does not cover, according to Janet Wulf, a home care registered nurse with Gilchrist Hospice Care in Baltimore, the largest hospice organization in Maryland. Convertible commodes with arms that fit over the existing toilet - and solid foam risers that fit on the toilet seat -- make sitting and getting up easier.
"Sometimes we suggest changing the shower head to install a hand-held shower head so that they can still participate in bathing themselves," Dr. Levine advised. Putting down nonskid bathmats with a rubber underside also helps prevent slipping. (Find other bathroom and household safety tips in an earlier post on fall prevention.)
7. Good lighting is critical.
Nighttime trips to the bathroom or even moving down poorly lit corridors on an overcast day can pose serious falling hazards for those whose eyes and minds may be declining. Night lights with light sensors in every room and hallway of the house are an energy-and-cost-efficient way to keep pathways lit and safe.
8. Bedside commodes are a delicate matter.
People resist bedside commodes, said Dr. Morrison. It's not only the lack of privacy, but it makes them feel like invalids. Dr. Morrison said he stresses with patients that it's safer than slipping and falling on the way to the bathroom. And it can be done discreetly. "I say, 'We can put it there at night and move it in the morning.'"
What if they still balk, as many do? Dr. Morrison had this useful reminder: "Our parents are adults and they are allowed to make bad decisions."
9. Make breathing easier.
If the patient experiences breathlessness, common for those with heart and lung disease, Dr. Morrison said, oxygen equipment can ease the discomfort and the anxiety that gasping for breath can trigger. The caregiver needs to practice not only operating the machines, but getting the long, plastic oxygen tubing out of the way as the patient moves around the house.
10. Are pain pumps or intravenous drips for pain helpful?
In most cases, they are not necessary. "We can control pain orally with medication that comes in highly concentrated form, so even if patients can't swallow, they can have pain control," Dr. Levine said. Or the patient can get a steady baseline of pain medication by wearing a skin patch, or a nurse can administer a shot (through the skin, not the muscle, which would itself be painful).
Occasionally, for those with long-standing pain issues who require unusually high doses of medication, an intravenous drip can deliver a steady supply, which can be controlled by the patient with a button (within limits) or by a nurse or caregiver.
In even more rare cases, for patients with the highest pain-control needs, an intrathecal pain pump can be inserted into the intrathecal space around the spine area, "much like an epidural used in childbirth," Dr. Levine said, and added that "It is an invasive procedure and requires a lot of monitoring." So it is most commonly used as a solution for chronic pain over many years - and rarely recommended for those with less than a few months to live.
11. Should you order a hospital bed?
The idea of bringing this piece of equipment home sparks some of the most emotional disputes, among patients and caregivers alike.
"It's a big deal to give up sleeping with a lifetime partner and the warmth and comfort of sleeping together," Ms. Wulf said.
It is also the one piece of equipment that clearly turns the home into a hospital. Small wonder so many resist, as the blogger who wrote the "Turning Home into a Hospital" post admitted.
"And there is the issue of where are you going to put it?" said Ms. Wulf, as the hospital bed is not only an extra bed in the home, but it is slightly longer than a regular twin bed.
But if your loved one is having trouble getting in and out of a regular bed, and your back is being strained as you help, the hospital bed, which lowers, can make that process safer and easier for both of you. (It is covered by Medicare.) Similarly, being able to raise the hospital bed can make assisting with dressing, changing adult diapers and making up the bed a lot easier.
Also, because the head and foot of the hospital bed can be adjusted separately, it can make patients (especially those with heart and lung disease who need propping up to prevent fluid from accumulating in the lungs and legs) more comfortable than they would be lying flat or propped up with an assortment of pillows.
For those with dementia, who forget to change position, or with cancer and other ailments that leave them too weak to move around, the hospital bed -- with an air compression mattress -- will do the job for them. It can prevent bedsores, which, according to Dr. Levine, "can start very soon in somebody who isn't turned and repositioned every three hours" all day and night.
12. Consider hospice.
Equipment aside, one of the biggest resources that a caregiver can call upon in these last stages, in addition to backup care from family, friends and home health aides, is hospice -- as we've talked about in this blog many times. I can tell you from my family's recent experience that hospice is like sending in a team of loving aunts - only they're far more patient (no family baggage) and way more competent.
A good hospice team not only helps the caregiver figure out a plan for care but arranges for Medicare approval and payment. What many don't know is that hospice even covers "respite care" for the caregiver - paying for up to five days of room and board for the patient in a nearby medical facility (or nursing home) so the caregiver can take a break - even to go on vacation, according to Lori Mulligan, senior director of development marketing and community services at Gilchrist Hospice Care, the largest hospice care organization in Maryland.
But as this blog has written many times before, too many people wait until the very end to call hospice. The median time in hospice is about 19 days, and more than a third of patients wait until the last week, according to the 2012 report tracking hospices nationwide from the National Hospice and Palliative Care Organization.
Why don't they take advantage of the six months of extra help at home that they are eligible for under Medicare once a prognosis is made?
First, "clinicians are not great at prognosis" until the very end, said Dr. Levine. And the patient and family aren't always ready to hear it.
"When people think of hospice, they think, 'Oh, my mom will be lying in bed all the time,'" Dr. Levine said. Or they worry that calling in hospice may actually hasten death. Instead, Dr. Levine has found just the opposite.
"I have been doing this for over a decade and I find my patients who choose hospice sooner at home may live a little longer," said Dr. Levine. When you shift the focus from a full-court press on cure (hospitals' goals) to providing comfort (hospice credo), patients can stop using all their energy to fight the pain, so they are more likely to have the energy to "eat and walk and do all the things they like to do that keep us alive," Dr. Levine added.
How do you know when it's time?
Dr. Levine advises: Ask yourself if you would be surprised if the person you're caring for would die within six months. And ask the patient about his or her goals. If he or she feels that all the treatment options have been exhausted but the disease is still progressing, and the patient is tired, doesn't want to go back into the hospital, and just wants the comfort of their own bed -- then it may be time to go home.
One more thing to bear in mind if you decide to call hospice: size matters.
"The larger the hospice, usually the more services for the patient and caregiver," said Dr. Morrison, referring to a 2011 study in Medical Care journal supporting the bigger-is-better rule of thumb. "Ask for their daily patient census - several hundred patients per day is a good size," Dr. Morrison added.
Remember, the point of all this is to make both the patient and the caregiver as comfortable as possible in those final days.
For most of us that can mean, "There's no place like home."
To even begin to answer that, you have to consider two things - not simply the patient's situation, but the caregiver's, too, said Dr. R. Sean Morrison, director of the National Palliative Care Research Center at the Mount Sinai School of Medicine in New York.
"What I see that prevents people from being able to stay at home [to die] is not their medical needs but the needs of their caregiver -- can the caregiver really help, are there resources to help, or is that person going to be overwhelmed?" Dr. Morrison said.
There is professional help available. But before we get to that, here are what specialists say are the most common kinds of equipment and preparations you may need - though, of course, every person's medical and emotional condition is different, as is every person's home.
1. Make room for the bed.
One of the trickiest parts of bringing the patient home is realizing that the bedroom may not be the best place to put the bed, especially if it's located up even a few stairs. "A lot of people put the patient in a family room where there is more space, or the dining room if it's closer to a bathroom," said Dr. Stacie K. Levine, a geriatrician and palliative care physician at the University of Chicago. Or you might consider a room closer to the kitchen - the center of life and activity for most families.
2. Don't forget curtains for privacy.
You can still provide privacy for whichever room you decide to turn into the bedroom by putting up a temporary curtain using a spring pressure curtain rod in the doorway. Especially in the patient's already vulnerable state, a little privacy can go a long way toward preserving dignity.
3. Get tools that keep them moving.
Walkers, four-point canes and slim wheelchairs all help the patient to get out of bed and take part in daily life (and are covered by Medicare). To get the house ready for this new equipment, Dr. Levine cautioned, you will have to remove slippery throw rugs, as well as chairs and other furniture that can get in the way. (See this earlier post and this post for more details on reducing fall hazards at home.)
Changing door handles from knobs to levers can make moving from room to room easier on the patient feeling weak or suffering from painful arthritis.
4. Fix their favorite chairs.
Many patients find that they are just too weak to get up from what used to be their favorite chair. You can buy risers or foam cushions to put on the seats -- or replace a side chair with an armchair -- to give them extra leverage and allow them to stay in their old spots comfortably.
5. Experiment with earphones.
You may need several models to fit into the TV, radio and iPods or tape players so those who are losing their hearing can still enjoy their entertainment, whenever they choose, without disturbing the rest of the household.
6. Make the existing bathroom safer.
"You'll need to install grab bars or benches inside the tub," Dr. Levine said. (Note: Tub benches, costing about $30 to $40, are one of the few things Medicare does not cover, according to Janet Wulf, a home care registered nurse with Gilchrist Hospice Care in Baltimore, the largest hospice organization in Maryland. Convertible commodes with arms that fit over the existing toilet - and solid foam risers that fit on the toilet seat -- make sitting and getting up easier.
"Sometimes we suggest changing the shower head to install a hand-held shower head so that they can still participate in bathing themselves," Dr. Levine advised. Putting down nonskid bathmats with a rubber underside also helps prevent slipping. (Find other bathroom and household safety tips in an earlier post on fall prevention.)
7. Good lighting is critical.
Nighttime trips to the bathroom or even moving down poorly lit corridors on an overcast day can pose serious falling hazards for those whose eyes and minds may be declining. Night lights with light sensors in every room and hallway of the house are an energy-and-cost-efficient way to keep pathways lit and safe.
8. Bedside commodes are a delicate matter.
People resist bedside commodes, said Dr. Morrison. It's not only the lack of privacy, but it makes them feel like invalids. Dr. Morrison said he stresses with patients that it's safer than slipping and falling on the way to the bathroom. And it can be done discreetly. "I say, 'We can put it there at night and move it in the morning.'"
What if they still balk, as many do? Dr. Morrison had this useful reminder: "Our parents are adults and they are allowed to make bad decisions."
9. Make breathing easier.
If the patient experiences breathlessness, common for those with heart and lung disease, Dr. Morrison said, oxygen equipment can ease the discomfort and the anxiety that gasping for breath can trigger. The caregiver needs to practice not only operating the machines, but getting the long, plastic oxygen tubing out of the way as the patient moves around the house.
10. Are pain pumps or intravenous drips for pain helpful?
In most cases, they are not necessary. "We can control pain orally with medication that comes in highly concentrated form, so even if patients can't swallow, they can have pain control," Dr. Levine said. Or the patient can get a steady baseline of pain medication by wearing a skin patch, or a nurse can administer a shot (through the skin, not the muscle, which would itself be painful).
Occasionally, for those with long-standing pain issues who require unusually high doses of medication, an intravenous drip can deliver a steady supply, which can be controlled by the patient with a button (within limits) or by a nurse or caregiver.
In even more rare cases, for patients with the highest pain-control needs, an intrathecal pain pump can be inserted into the intrathecal space around the spine area, "much like an epidural used in childbirth," Dr. Levine said, and added that "It is an invasive procedure and requires a lot of monitoring." So it is most commonly used as a solution for chronic pain over many years - and rarely recommended for those with less than a few months to live.
11. Should you order a hospital bed?
The idea of bringing this piece of equipment home sparks some of the most emotional disputes, among patients and caregivers alike.
"It's a big deal to give up sleeping with a lifetime partner and the warmth and comfort of sleeping together," Ms. Wulf said.
It is also the one piece of equipment that clearly turns the home into a hospital. Small wonder so many resist, as the blogger who wrote the "Turning Home into a Hospital" post admitted.
"And there is the issue of where are you going to put it?" said Ms. Wulf, as the hospital bed is not only an extra bed in the home, but it is slightly longer than a regular twin bed.
But if your loved one is having trouble getting in and out of a regular bed, and your back is being strained as you help, the hospital bed, which lowers, can make that process safer and easier for both of you. (It is covered by Medicare.) Similarly, being able to raise the hospital bed can make assisting with dressing, changing adult diapers and making up the bed a lot easier.
Also, because the head and foot of the hospital bed can be adjusted separately, it can make patients (especially those with heart and lung disease who need propping up to prevent fluid from accumulating in the lungs and legs) more comfortable than they would be lying flat or propped up with an assortment of pillows.
For those with dementia, who forget to change position, or with cancer and other ailments that leave them too weak to move around, the hospital bed -- with an air compression mattress -- will do the job for them. It can prevent bedsores, which, according to Dr. Levine, "can start very soon in somebody who isn't turned and repositioned every three hours" all day and night.
12. Consider hospice.
Equipment aside, one of the biggest resources that a caregiver can call upon in these last stages, in addition to backup care from family, friends and home health aides, is hospice -- as we've talked about in this blog many times. I can tell you from my family's recent experience that hospice is like sending in a team of loving aunts - only they're far more patient (no family baggage) and way more competent.
A good hospice team not only helps the caregiver figure out a plan for care but arranges for Medicare approval and payment. What many don't know is that hospice even covers "respite care" for the caregiver - paying for up to five days of room and board for the patient in a nearby medical facility (or nursing home) so the caregiver can take a break - even to go on vacation, according to Lori Mulligan, senior director of development marketing and community services at Gilchrist Hospice Care, the largest hospice care organization in Maryland.
But as this blog has written many times before, too many people wait until the very end to call hospice. The median time in hospice is about 19 days, and more than a third of patients wait until the last week, according to the 2012 report tracking hospices nationwide from the National Hospice and Palliative Care Organization.
Why don't they take advantage of the six months of extra help at home that they are eligible for under Medicare once a prognosis is made?
First, "clinicians are not great at prognosis" until the very end, said Dr. Levine. And the patient and family aren't always ready to hear it.
"When people think of hospice, they think, 'Oh, my mom will be lying in bed all the time,'" Dr. Levine said. Or they worry that calling in hospice may actually hasten death. Instead, Dr. Levine has found just the opposite.
"I have been doing this for over a decade and I find my patients who choose hospice sooner at home may live a little longer," said Dr. Levine. When you shift the focus from a full-court press on cure (hospitals' goals) to providing comfort (hospice credo), patients can stop using all their energy to fight the pain, so they are more likely to have the energy to "eat and walk and do all the things they like to do that keep us alive," Dr. Levine added.
How do you know when it's time?
Dr. Levine advises: Ask yourself if you would be surprised if the person you're caring for would die within six months. And ask the patient about his or her goals. If he or she feels that all the treatment options have been exhausted but the disease is still progressing, and the patient is tired, doesn't want to go back into the hospital, and just wants the comfort of their own bed -- then it may be time to go home.
One more thing to bear in mind if you decide to call hospice: size matters.
"The larger the hospice, usually the more services for the patient and caregiver," said Dr. Morrison, referring to a 2011 study in Medical Care journal supporting the bigger-is-better rule of thumb. "Ask for their daily patient census - several hundred patients per day is a good size," Dr. Morrison added.
Remember, the point of all this is to make both the patient and the caregiver as comfortable as possible in those final days.
For most of us that can mean, "There's no place like home."
