4 and 1/2 Things You May Not Know About Hospice Care

I'm often in the position of suggesting hospice care as an option for patients in the last months of life. The first thing I do is gauge what people know, or think they know, about hospice. because over the years, I've encountered a great deal of confusion on this topic. In case you're not already an expert, here are a few pointers to help you understand the basics.

1. Hospice isn’t a place. This is a common misconception - maybe because the word sounds like “hospital,” or maybe because it’s appealing to imagine there are freestanding facilities where people can go to die peacefully. However, typically when a hospice program does have a designated inpatient unit, the beds there are reserved for short-term stays, usually no more than a couple of days, and generally only for patients whose symptoms cannot be effectively managed at home. An important exception is New York’s Calvary Hospital, where the average length of stay is 26 days.

2. Home hospice refers to services coordinated - and delivered - by a certified agency that receives reimbursement on a per-patient per-day basis. The services provided are determined by Medicare regulations and include nurse visits, home health aides, volunteers, spiritual support, and a social worker. The care is designed to ease the burden on families and allow the patient stay at home as long as possible (though sometimes “home” may mean a nursing home or assisted living facility). Needed supplies and medications are delivered directly to the home and, if the patient's symptoms warrant, a skilled nurse can be available to provide direct care for short periods. For more details, this document is a good summary of Medicare's Hospice Benefit. Private insurance benefits may not be identical to Medicare’s when it comes to hospice services, just something to keep in mind. A hospice agency can make the necessary inquiries and let you know the services for which you qualify.

3. Hospice does not provide round-the-clock care. This is another common misconception and often the biggest surprise to families since day to day caregiving is often their most crucial need.. A home health aide may be provided by hospice for a few hours a day, usually for 5 days a week. While welcome, this is far from the 24/7 coverage required to keep up with the demands of many very ill or dying patients.

4. You have choices when it comes to Home Hospice. Agencies serving New York City include:

  • MJHS - Metropolitan Jewish Health System Hospice and Palliative Care. 212-649-5555
  • VNSNY - Visiting Nurse Service of New York Hospice and Palliative Care. 212-609-1900
  • Calvary@Home - 718-518-2000
  • Hospice of New York - 718-472-1999

All hospice agencies are governed by the same Medicare regulations, but for each individual patient and family, it’s worth knowing that there can be substantial differences among agencies in terms of responsiveness, quality (and quantity) of services offered, accessibility to staff by phone, and even willingness to admit the patient for services in the first place. If one hospice is unavailable to do an admission you can try another. Once you’re receiving services, if you’re not happy with the care your loved one is getting (and you feel you’ve exhausted all resources to get it) you may be able to switch to a different agency to see if that makes a difference. Complaints about agencies in New York should be directed to the New York State Department of Health. Their Home Health Hotline is 800-628-5972.

Finally, as usual the glass is only half-full. While hospice agencies have amazing resources at their disposal (their nurses are some of the best I work with), there are reasons you may not wish to choose hospice care at the end of life. I will tell you why and describe your other options in my next post. Stay tuned.

Partners in Dementia Care

The Alzheimer's Foundation of America offers some amazing free resources for caregivers of patients with dementia, including :

  • A Helpline staffed by social workers from 9 am to 9 pm Eastern time - 866-232-8484
  • Care Connection - a free monthly teleconference with experts on dementia. Topics include medical, behavioral, practical, social and spiritual issues. These sessions are held the second Thursday of each month from 1 to 2 pm Eastern time. To call in, dial 877-594-8353 and enter Guest ID 46692951#. Tomorrow's teleconference will highlight the Foundation's professional training tools, specifically their Partner in Care Training. Check out the trailer!

  • Free Memory Screenings. In New York City: every other Monday from 11 am to noon at 322 8th Avenue, 7th Floor. Call to make an appointment 866-232-8484. For screenings outside NYC, including Canada, check out their search tool.

I'll be leading the teleconference on June 9th, 2016. The topic will be Dementia & Depression. Check back for call-in information ahead of that date.

 

 

A New Testimonial

I love my job.

I love taking care of people at home, in any stage of illness, from those who are well and stable to those at the end of life.

What I love most are the wonderful connections I make with families and other caregivers. I felt really blessed to receive this testimonial in the mail this afternoon. I'm sharing it here and will post it on the Testimonials page as well.

Our family first met Dr. Barton while my Father was on his deathbed and, as a result of her care, we were able to fulfill his wish to stay at home until his passing. The entire experience was in stark contrast to the hectic and much less personal hospital or care facility experience. She and her office and nursing staff were incredibly kind and efficient and always available. We look back on my Dad’s passing with great peace of mind that he had the very best care and a most peaceful passing. Now, she cares for my Mother, who is relatively healthy, but who prefers to have her doctor visit her at home.


The Longest Day

Caring For Mom and Dad

A popular book about caregiving for patients with dementia is called The 36 Hour Day. While today, the summer solstice, is the longest day of the year for caregivers in the trenches every day can feel never-ending.  As it happens, today is Father's Day as well, an opportunity to talk about caregiving for aging parents, no matter what their diagnosis. A while back, PBS aired a wonderful documentary called Taking Care of Mom and Dad. You can watch it online at http://www.pbs.org/wgbh/caringformomanddad/. PBS is airing it again at 7:00 tonight if you'd like to watch it the old-fashioned way.

Caring for Mom and Dad does a fantastic job of highlighting so many important issues: the needs of an aging population, the stress of caregiving on families, the limited public resources available to help care for those who remain at home in their final years, and the importance of advance care planning. This is an almost silent crisis in our society, with few people aware of the challenges of caregiving - the overwhelming financial toll, as well as the emotional cost - until they are faced with a loved one in decline. 

One of my colleagues Patricia Mulvey was interviewed for the program and discusses how using a Certified Geriatric Care Manager can do so much to ease the burden on families. I frequently work with care managers and couldn't agree more. They can provide a real sense of safety for families struggling to do it all alone. There are a number of other excellent resources on PBS's website fro the film. Worth having a look!

Happy Father's Day everyone. And Happy Summer Solstice. May this longest day be a happy one for all.

Communication & Dementia

It can be so very difficult to communicate with someone whose brain has gone a little haywire. This lovely short film reminds us how desperately patients with memory loss may still want to communicate, and how hard it can be to help, requiring all of our patience and not a little creativity.

Dementia is like a prison. I think of it that way a lot. As the mind is going the patient knows things aren't right. They're not sure why or what they have lost but they are sure they are gradually losing more and more control over their lives. And they're right. It's terrifying to be that vulnerable. I believe that terror that lies at the root of so many of the behavior problems we contend with in dementia patients. The outbursts. The oppositional behavior. The refusal to bathe. The anger. The name-calling. You can see the fear in their eyes. Meeting that fear with kindness and patience what I hope all of us, caregivers and health professionals alike, are working towards. It can be transformative.

In treating difficult behavior, I turn to medication only when I have to, either as a safety measure - at the extreme, it's sometimes safer for everyone involved when the patient is sedated; or as a palliative measure when there is delirium and intense confusion and frightening hallucinations. Under these circumstances I see sedation as palliative. Because no one should have to live as though in a nightmare. I'm not talking about sedation to the point of sleep, but giving medication as necessary to help achieve some blessed calm for the patient.

Luckily, there are some important non-pharmacologic measures that can help a patient with dementia or delirium feel safer, more relaxed, and more in control. Over time, I've learned many strategies that can help patients settle in the moment and sometimes in the long term, ones that don't rely on the use of sedating medication. How do we find out about these things? Well, I pick up a lot of tips from families and caregivers as I go on house calls.

Online, I often go to Bob DeMarco's website Alzheimer's Reading Room as a first stop. It's a treasure box of useful information, with tips for caregivers and health professionals on how to solve a great many problems. Once you're on the site, you just have to ask the right questions in the search bar. You'll be amazed by what you find. That was how I learned about Pete the Repeat Parrot.

In this touching article Bob DeMarco describes how his mother (also named Dotty as it happens) responds to Pete the Repeat Parrot: "A toy parrot is engaging my mother. Pete is raising Dotty's level of engagement. The best part is when she starts laughing. Laughing means good mood, laughing means higher level of cooperation. Higher level of cooperation means less stress. Less stress means greater happiness. It is like a beautiful daisy chain of events, feelings, and emotions." You can also see Pete in action in this video. Have a look!

Pete the Repeat Parrot is not at all obvious as a tool to use with patients with dementia. It's a children's toy that is designed to help with language development. It's not meant for the elderly and I would never have guessed the profound impact this little thing would have for some of my patients. But it's been quite astonishing and really heartwarming to see it in action. Talking to this stuffed parrot brings so much delight to folks who have trouble communicating but who still want to engage and be engaged. It doesn't work for everyone, but if you are caring for someone with moderate dementia it could be worth a try. If it works, it might give you a little time when the person you're caring for is entertained and at ease, time you can use to focus on other things, time to restore a little of your own sanity, allowing you to approach the next challenge of caregiving with more patience, and yes more creativity too.

 

Getting From Here to There

To reach my patients in the city, I walk and take the subway when the weather’s wet or if there’s an especially stiff wind. But otherwise even on the coldest days my favorite way to get around Manhattan, parts of Brooklyn and even Queens, is on my white “steed,” the sweet and surprisingly sturdy Dahon folding bike I snagged on Craigslist a number of years ago.

When it's really cold out, I don my light down jacket, careful to zip my phone into one pocket and my reading glasses into the other. To keep it from catching on the chain ring, I tuck the cuff of my right pant leg into the top of my sock. I enjoy dressing up a bit, cycling in heels even, or what are heels for me, shoes I wouldn’t wear to do much walking in, but ones that are ok on the pedals.

I might wrap a slim scarf lightly around my neck. My heavy black gloves don’t do much for my dexterity but they have never failed to keep my hands warm. I usually wear my helmet. If I wear a hat as well I almost always wind up taking it off after a short while. No matter how low the temperature, my body warms up fast as I try to make good time going uptown or downtown on the avenues or negotiating the sometimes hilly cross streets. Especially on weekdays, the avenues are clogged with taxis and trucks and buses, and it feels perilous and exciting to ride among them. It’s like Jurassic Park - they’re like big dinosaurs I try to keep my distance from. I never want to be invisible to them but I assume at all times that I am, that any false move could wind up being fatal.

But the thrill of riding is worth it. I love the feeling of my body doing the work. I love the wind in my face. I enjoy the familiar smell of the streets and the immense variety of people and dogs and other things that fill them. There is a sense of constant surprise that I find utterly delightful. Most of all I love the keen attention that riding demands. I feel truly alive as I dodge pedestrians, make split-second lane changes, and watch at all times for every possible danger. In the park it’s easier of course. When I can I ride through the park or along the river, or use one of the bike lanes that have multiplied around the city. No matter what, no matter how bad the traffic might be, no matter how hungry or tired I am, I am happiest riding. 

And what do I carry in my bike's back basket? Everything I need.

My green leather satchel holds all the tools I use to make house calls - my laptop of course, and a cable to charge my phone. My wallet and some business cards. Especially if I’m walking I make sure I have my little umbrella. Neither my bike nor my bag signal that I’m a doctor making rounds, which allows patients some privacy and doesn’t alert ne’er-do-wells that I might be carrying controlled substances. 

Into the same pocket as my computer I slide my patients’ charts, along with a folder with blank intake forms in case I get a call and need to see someone new on the fly. Alongside the charts I carry a couple of sturdy plastic folders. One is sort of like my notebook; it holds a sheaf of paper with my current notes on whatever projects are occupying me; the other holds a variety of forms - the ones I know for sure I will be needing that day along with the ones I find myself using with some frequency. 

My frequently used forms include a Do Not Resuscitate form and a MOLST (Medical Orders for Life Sustaining Treatment) form; my favorite mental status test - the VA’s SLUMS (St. Louis University Mental Status examination), which is a little friendlier to administer than the standard Mini Mental Status Exam; Medicare’s hospice criteria for various conditions; and an opioid conversion chart so I can easily calculate equivalent doses of narcotics when switching from one to another. Of course I also have my prescription pad and a little personalized note pad for jotting down instructions for my patients and their caregivers.

In addition to written instructions I often leave caregivers with handouts about various common problems. Depending on the patient on any given day I may be carrying handouts on such topics as Constipation; Hiring Caregivers; End of Life Planning; Breathing for Stress Relief; Delirium; Dementia Safety Tips; Pressure Ulcers; How to Move Patients; or Pain and Symptom Tracking.

My iPhone is indispensable. I often use it to search the web or tether it to my laptop to get an internet connection. I use the phone's camera as a scanner or a copier, capturing documents, business cards and the prescriptions I write for controlled drugs. In the phone's contacts I keep numbers for mobile dentists, podiatrists, radiology, labs with mobile phlebotomy, along with hospices and home care agencies, and worthy home health aides. 

I find I don’t need to carry much in the way of diagnostic equipment. Most days it's just my trusty green Littman stethoscope and a zippered bag with blood pressure cuffs in 4 sizes (since my patients can range from extraordinarily thin to the opposite). Also, a pulse oximeter, useful in cases of congestive heart failure or lung disease, though I use it on virtually everyone whether I need to or not. It’s small and noninvasive and when I slip it over the patient’s fingertip it gives me a chance as I begin the physical exam to hold their hand for a minute. This is a lovely way to start, to make a connection, to show a little affection.

What else do I carry? Gloves of course. Tongue depressors and an otoscope; disposable scalpels and hand sanitizer; swabs and a suture removal kit; syringes and needles. That’s about it. That’s all I ever need. At the end of a visit everything goes back into its proper place, Packed up, I say my goodbyes and head back out to the street. I breathe in the (relatively) fresh air, check my phone for messages, unlock my bike, secure my bag in its basket and I'm on my way to my next patient.

Zooming around on my bike with my whole clinic in my bag I am grateful for my most interesting life.

 

 

 

Testing for Alzheimer's & Other Dementias

dementia

June is Alzheimer's & Brain Awareness Month. While Alzheimer's Disease is the most common and the most widely known, it's far from the only type of dementia. In fact, Alzheimer's and other dementias so frequently coexist in the same person that it's not always clear exactly what's contributing to an individual's cognitive decline. Still, although generally speaking there's very little available in the way of treatment for dementia, it can be critical to rule out certain causes. For one thing, you obviously want to know if you're dealing with something reversible. And, it can be important to identify the type of dementia since some respond very poorly to typical medications we might use to help manage difficult behavior. 

Luckily, when making an assessment we have some clues to go by and of these one of the most important is the history given by family members. A good clinician will take the time to get a thorough history in addition to ordering blood tests and brain imaging.

For patients whose cognitive decline is still in its early stages, or if the diagnosis is in doubt, I often make a referral for formal neuropsychological testing. Neuropsychological testing can provide diagnostic guidance as well as a benchmark against which to measure further decline. Here are some resources in New York City:

Columbia Clinical Neuropsychology Service

Mt. Sinai Neuropsychological Testing & Evaluation Center

Mt. Sinai Alzheimer's Disease Research Center Diagnostic Evaluations

Weill Cornell Neuropsychological Evaluation

NYU Neuropsychological Testing

In the coming weeks I will post more on dementia-related topics, including the role of music; an interesting tool for speech and communication that can help patients feel less isolated; the difference between delirium and dementia; the use of medicinal marijuana; considerations regarding nutrition and hydration; and other resources for caregivers.

A Doctor for the Doctor-Averse

stethoscope.jpg

I often care for patients who have spent their lives avoiding doctors. They may be young or they may be in their 90's but they have little “practice” being patients. So where do I fit in? How can I help?

These patients hope I will be a different kind of doctor than the ones they tell me they've avoided over the years. Luckily, I do practice a different kind of medicine, one that focuses not on a particular organ system or disease, but on the overall wellbeing of each individual who entrusts me with their care.

So, even though these folks may never have taken even one aspirin or gotten a flu shot in the past, even though they took everything doctors said with more than a grain of salt, they have called because they want my expertise. They are suffering and they hope I have some answers for them. All my tools are at the ready, but my most useful tool is my intuition. 

If a patient signals they are skittish about having their blood pressure taken at the first visit, I may wait until we've developed more of a rapport. My approach is to meet people where they are. I may try to convince them of the wisdom of some particular intervention or I may realize before I even start that this is not a road they're willing to go down. I do what I can, and when necessary look for alternative paths that may achieve the same goal.

Each of us is vulnerable in the face of illness. Respect for my patients, even for the ones who don't much like doctors, is part of my job. It's a challenge I enjoy. It's where I start from every day I go out on house calls, meeting people at least halfway.

Crossing the Threshold - House Calls to Patients Nearing the End of Life

House Calls

I shoulder my backpack and head out to see Mrs. A, a new patient. She is in her 90’s and plagued with severe osteoarthritis and moderate dementia. She has lost much of her sight and her hearing is likewise greatly diminished. She lives in a tiny apartment with her daughter who provides almost all of her care. Her daughter has called me because her mother is suddenly not eating very much and has grown weaker to the point where her legs can no longer bear weight. Her daughter reached out to hospice but Adult Failure to Thrive is no longer a qualifying diagnosis and she has been rejected for their services. The patient cannot get out to see the doctor who’s known her for years and her daughter worries that her mother, in failing health and in pain every time she is moved, will suddenly takes a turn for the worse. She wants to keep her mother home but isn’t sure how. And, at the very end, she wants her mother’s body treated with respect. She doesn’t want to call 911. Can I come and check her out and make sure she gets the most appropriate care? 

I make house calls in New York City, providing home-based care. Many of my patients are at the end of life, but not all. My practice is unique and the sort that even most doctors don’t imagine exists. It’s certainly very different from the one I had imagined for myself in medical school or residency, but my work is more satisfying than any other I could imagine.

Home visits are the ideal way to care for the medically fragile and patients at the end of life. When I walk into the home I have a unique opportunity to gauge what problems - medical and not strictly medical - need to be addressed. An intimacy can quickly develop, even with patients who are new to me, allowing insights that would be impossible to achieve in the exam room.

Mrs. B is a 70-year old widow who up until recently had enjoyed relatively good health despite a long history of alcohol abuse and depression. Her son is concerned because during his frequent visits to her apartment he notices his mother’s increasing fatigue and even a little disorientation. Her thinking is slowed. I arrive to find a proud, soft-spoken woman with upswept white hair and a presentation that belies severe anemia. Her smooth skin, her conjunctivae and nailbeds are almost as pale as her hair. She has postural hypotension and has taken some falls. When I ask to see how she gets around she slowly gets down from the bed and to show me how she uses her folding shopping cart as a walker. I order mobile phlebotomy and a call in the middle of the night tells the tale. Her hemoglobin is 4. The next day I return and though she’s resistant I convince her to let her son take her to the hospital. Exploratory surgery reveals metastatic endometrial cancer with a poor prognosis. She returns home and a few weeks later at her son’s request I call the oncologist before meeting with them to discuss her options. Her prognosis isn’t good either way, maybe 2 years, 5 on the outside. The chemo has little chance of lengthening her life, and a high probability of decreasing its quality. Moreover, the patient has an intense aversion to appearing ill, especially in public. After I explain what the oncologist has told me she decides to forego chemotherapy. At her son’s suggestion she agrees to start taking an antidepressant. I write out the prescription and promise to help her get through her last few years with as much comfort and dignity as possible.

With patients who are cognitively intact, I may do quite a bit of counseling, and these discussions happen more easily in the patient’s home than in the hospital or the office exam room. Sitting at the bedside or at the kitchen table, my presence signals that I have crossed a boundary that most doctors will not cross. I am unafraid, open to their suffering. I am not there to “cure” them but to be part of their life, an extension of home and family, until the end. 

Mrs. C is in her mid-80‘s now and has spent a lifetime avoiding traditional doctors. At the age of 23 doctors had recommended mastectomy for her breast cancer and she had refused. She believes that her use of alternative therapies has kept this malignancy at bay, but now the cancer has finally returned. A PET scan shows widely metastatic disease, including a time bomb - a particularly worrisome osteolytic lesion in one hip. She knows she is just one step away from a fracture yet she wishes no treatment by oncologists or surgeons, no radiation, no hospitalization. In fact, she wishes no treatment at all no matter how palliative. Her current doctor, who practices integrative medicine refers her to me for end of life care. 

At the first visit in all cases I make a thorough assessment. I perform a good physical exam and listen to the patient’s story. As I listen to the patient and their caregivers I consider:

What are the primary concerns? What is the patient and family’s understanding of the illness and its trajectory? What are the goals of care? What immediate practical problems need to be solved in order to honor those goals? Are there medications that would best be stopped? Are there medications or other therapies that should be started right away? 

I consider the caregivers’ needs as well. Are they exhausted? What resources are available to relieve some of the strain? That becomes part of the plan as well. And through it all, I consider the meaning this illness has for those involved. 

If I think it will decrease the need for opiates and sedatives, or reassure a family member, I may gently address existential and spiritual pain, the fear of death, and consideration of what has made this a good life.

Matthew’s elderly mother calls me, frantic. The hospice nurse has been there and given her 45 year old son some Ativan, but he is still agitated. Matthew has Downs Syndrome and is dying of heart failure secondary to the cardiac defect with which he’d been born. I tell his mother to give him some Haldol and say I can come over if she needs me. She says, "Well, if you're in the neighborhood, doctor, I'd really appreciate it." 

When I arrive at the home the door is unlocked and I let myself in to make my way to Matthew’s mother’s bedroom. His hospital bed is been positioned there so they face each other, to allow them to greet each other in the morning and likewise at night to say their good nights. This morning he'd tried to greet his mother when he awoke, but was finally too weak. I look down Matthew. His skin is grey blue and he is struggling to breathe. 

His eyes, when he looks at me, reveal another struggle. He wants to say hello as he always has. But he is losing strength with every passing minute. I watch then as he looks at his mother and seems to vaguely search her face for meaning. Why is this happening to him? He stares straight ahead, never blinking, as his breaths come fewer and further between. His mother collapses in tears and I hold her as she cries in her chair at his bedside. Then she rises to bend her body over his head to cradle it, saying, "You're going to be with daddy now."

I help her take the oxygen tubing off her son's face. I wipe the spittle out of Matthew’s mouth. I give him more morphine when it seems he might still be struggling. I stay by his side as he takes his last breaths, in little heaves. Then the breathing seems to stop. His body isn't entirely done though. A minute later, another breath, then a number of seconds later, one more, his last. His mother asks me if this is the end, if I know. And I say I'll wait a minute, that I like to feel that someone's finally at rest before I check their heart with my stethoscope. 

Matthew's eyes are still open and I reach over to bring his lids down, to give him the appearance of rest. His mother leaves the room and in the quiet I make some calls, to hospice, to his pastor. I make sure to untangle the oxygen tubing from the bedrails, and pile it next to the machine. He'd been tethered to that tubing so many years of his life. He never understood how sick he was. He had lived for 45 years as an innocent child. When I reach the pastor he reminds me that Matthew had brought “exuberant joy” to all.

These are just a few stories of patients who have come into my life.

 

How Did I Get Into This Line of Work?

Hospital-Scene_jpg_312x1000_q100.jpg

It was in residency that I discovered I had a gift for having those difficult conversations with patients and families at the medically frail. My firs encounter with end of life care was when I was on weekend call in the hospital on the medical floor. A middle-aged woman, severely undernourished, had been admitted with ALS (amyotrophic lateral sclerosis or Lou Gehrig's Disease). She had dysphagia (trouble swallowing) and was having more and more trouble breathing. The patient was clearly dying and she was cognitively intact. Her daughters had gathered around. Everyone knew and had accepted that this was the end.

No one had trained me for such a situation. Indeed, no one was really trained in end of life care at that point. This was before Palliative Care, a discipline which seeks to provide patients with relief from symptoms, pain, and stress, was a specialty and I had no idea what I was doing at first. It took courage in the middle of the night to turn up the morphine drip to ease the patient's breathing as her swallowing failed and she could no longer clear her airway of saliva.

It took courage to go in and talk to this woman’s daughters about what was happening and why. I found that I was quickly able in such situations to assess the needs of the patient, as well as the needs of the family, and to honor their desires as they navigated difficult illnesses, whether the patient was close to the end or not. I was good at explaining the benefits and burdens of proposed therapies. I was good at helping people die a better death, and to enjoy as much of life as possible in the meantime.

My first work out of residency was running a solo family practice office and in that capacity I very much missed the challenges of taking care of patients at the end of life. I am so glad that the last decade has allowed me to focus more completely on this most satisfying work.

I have to come to see palliative care as a very high calling, an extension of my commitment to providing the best primary care. 

Under the Skin - An Alternative to IV Hydration

Many questions about food and fluids arise in the care of patients at home, in both the young and the old, the sick and the relatively well. Of course the response in each case must be tailored to the patient's condition and their goals of care. Are we preventing or treating wounds? Are we grappling with constipation or delirium? Does the patient wish to extend life as long as is practical or to prioritize quality of life over longevity?

Delirium is an example of a symptom that can resolve with proper hydration. In this context, I am often asked about intravenous fluids. Although patients can receive IV fluids at home (they don't have to go to the hospital) it's not my preferred way of delivering hydration when oral intake is insufficient.

I like to use a technique that is unfortunately little used outside of veterinary medicine. It's called hypodermoclysis, and it involves the placement of a very small needle under the skin. Fluid runs very slowly (passively even, if you're not using a pump), through tubing to the needle and into the tissue where it is absorbed into the body.

The technique of hypodermoclysis is uncomplicated and requires little training. Done correctly, the risk of infection or complication is exceedingly low, much lower than the risks posed by IV’s. Many medications can be delivered this way as well. It's not for everyone of course, but I consider subcutaneous hydration an essential tool of palliative care, one that has the potential to improve both quality and length of life.

A Poem in My Pocket

Today is the last day of National Poetry Month and I learned that it is also Poem in Your Pocket Day (who knew?), a day when we are encouraged to carry a poem in our pocket to share with another person. This is the poem - by Jane Kenyon - I will print and read aloud to a friend:

Let Evening Come
BY JANE KENYON


Let the light of late afternoon
shine through chinks in the barn, moving
up the bales as the sun moves down.

Let the cricket take up chafing
as a woman takes up her needles
and her yarn. Let evening come.

Let dew collect on the hoe abandoned
in long grass. Let the stars appear
and the moon disclose her silver horn.

Let the fox go back to its sandy den.
Let the wind die down. Let the shed
go black inside. Let evening come.

To the bottle in the ditch, to the scoop
in the oats, to air in the lung
let evening come.

Let it come, as it will, and don’t
be afraid. God does not leave us
comfortless, so let evening come.



Jane Kenyon, “Let Evening Come” from Collected Poems. Copyright © 2005 by the Estate of Jane Kenyon. Reprinted with the permission of Graywolf Press, St. Paul, Minnesota, www.graywolfpress.org.

Source: Let Evening Come: Poems (Graywolf Press, 1990)
— http://www.poetryfoundation.org/poem/175711

We're Moving!

The winds of the Upper West Side are happily blowing me, my bike and my medical kit to a new home, just 6 blocks away from the Ansonia, the place I have called home for more than a year. I'll still be working out of my apartment, but now I will have a real kitchen! And a little outdoor space! And sunlight! I'm bursting with joy. My loyal assistants Ryan and Catherine are settling into a new home in Princeton, so this spring is truly a time for nesting around here!

My practice has a new mailing address, also in the neighborhood:

27 West 70th St, Suite 2A . New York NY 10023

Here's to spring and new beginnings!

The Illustrious Ansonia

The Illustrious Ansonia

For the Life of Me

This Friday, April 17th there will be a special screening of the documentary For the Life of Me: Between Science and the Law, a film about the use of cannabis for the treatment of cancer, and one woman's odyssey to see if it would help slow the progression of her disease. 

The film follows my friend and Princeton neighbor Patricia Crone as she explores what we know about the use of cannabis as a treatment for cancer. I have yet to see the film, but Patricia is a determined and inspiring presence and I'm sure it will be enlightening.

The film will be shown at 7 pm at the Elebash Recital Hall at the CUNY Graduate Center at 365 Fifth Avenue (between 34th & 35th Streets). The screening is free, but seating is limited. I'm looking forward to being there.

 

The Country of Medicine

I recently met a woman on the Lower East Side who related a cautionary tale about the end of life.

A decade ago her parents, New Yorkers in their early 80's - let's call them Jane and Frank, had been in relatively good health. Despite their frailties they enjoyed their apartment, their neighborhood, and city life in general, and traveled together to see grandchildren a few times a year.

Jane was then diagnosed with breast cancer. I will stop here and just say that, all other things being equal, the highest risk for developing cancer is advancing age. So the diagnosis wasn't surprising from that standpoint. Still, Jane and Frank were caught by surprise and soon found themselves coping with a cascade of confusing tests and treatments, along with an often dizzying array of difficult decisions relating to Jane's care.

On the advice of her doctors, Jane quickly embarked on a precipitous medical journey of chemotherapy and multiple hospital admissions, a journey of three years during which she never again felt well and her family was never at peace. As things went from bad to worse, Jane wanted to get off the merry-go-round of doctor's waiting rooms, emergency room visits, and days (and sleepless nights) in the hospital. The family wanted to honor Jane's wishes. They wanted to keep her home and comfortable. But they didn't know how and they didn't know where to turn for help. Jane died in the hospital, her body a battleground and her family exhausted and traumatized.

This story is a familiar one. But the next thing that happened is a surprise. After seeing first-hand the over-medicalized life Jane had endured in her final years, Frank - again, also in his 80's - left New York and moved to Central America. I'm sure the weather is better but that's not why he moved. He left the States because that is how he felt he could best protect himself from the suffering he'd seen Jane, and the rest of the family, go through at the end.

Frank didn't want to die that way. He didn't want to live that way. And the only way out as he saw it was to leave the country. 

I am here to say there are other options. 

Delirium and Dance

My good friend David Neumann is finally bringing his amazing dance/theatre piece back to New York on April 15th. The run ends on April 25th and I recommend getting a ticket and checking it out. I Understand Everything BetterDavid's latest piece, is near and dear to my heart, telling the story (in metaphor of course) of his father's experience in the last weeks of his life. 

Employing a combination of personal narratives, traditional Japanese theater, and his own poetic approach to performance, Bessie Award-winner David Neumann’s newest dance-based work, I Understand Everything Better, examines a man on his death bed, a meteorologist reporting from within a storm, and a great actor who might be performing a Kabuki play about a dying man in a great storm.

Delirium is of special interest to me, both practically and theoretically. We know so little about what makes the brain go kaflooey in this particular way, and often have only a few clues about what we can do to bring the brain back to the here and now once it's gone astray. As this piece was being developed I was pleased to provide a little extra background on delirium from the physician's point of view, from potential causes to accurate assessment of the confused patient.

Speaking of confusion, the distinction between delirium and its cousins dementia and depression is often misunderstood. I look forward to writing more on this topic, and of course to seeing David Neumann's piece in its latest iteration.