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.