{"id":858,"date":"2008-12-04T14:50:10","date_gmt":"2008-12-04T19:50:10","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=858"},"modified":"2009-01-03T00:10:56","modified_gmt":"2009-01-03T05:10:56","slug":"how-we-die","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2008\/12\/how-we-die.html","title":{"rendered":"How We Die"},"content":{"rendered":"<p>This is what I know about death.<\/p>\n<p>Admitted to a nursing home with a broken hip-dehydration, my ninety-eight-year-old grandmother awoke from a deep slumber, laughing and clapping her hands when my five-year-old\u00a0daughter played the violin.<\/p>\n<p>A week later she had a stroke and could not swallow.<!--more--><\/p>\n<p>We wanted to leap in and save her, but all we could do was swab her lips with lanolin as she lay gasping for water, or food or perhaps air.<\/p>\n<p>It took days for her to die.\u00a0 A staunch Presbyterian, an even stauncher Republican, she had worked in her garden nearly every day of her life.\u00a0 Her heart and lungs were so strong they would not stop, even when we wanted them to stop.<\/p>\n<p>An African-American colleague, raised by a grandmother in an old house in Oakland, refers to death as &#8220;crossing over.&#8221;\u00a0 Her family could barely afford air conditioning, much\u00a0assisted living or serial emergency room visits.<\/p>\n<p>Beginning in her childhood and continuing through every decade of her adulthood, she ushered more than a dozen of her caretakers and relatives into death, watching, waiting for the doctor\u2019s footsteps, praying, listening to the sounds of the old house creaking.\u00a0 By her 40s, she was both traumatized and death-wise in a way that I would never be.<\/p>\n<p>I envied her.\u00a0 She had a spiritual concept of dying, not a medicalized one.<\/p>\n<p>I know from the controversial PBS documentary <a href=\"http:\/\/www.pbs.org\/independentlens\/lioninthehouse\/02_index.htm\"><em>Lion in the House<\/em><\/a> that physicians will do almost anything to avoid\u00a0the &#8220;d&#8221; word with families whose children have end-stage cancer.\u00a0 They discuss treatment options and wait for the other shoe to drop, a\u00a0dance\u00a0which seems to drive their support staff insane.\u00a0 However kind, these physicians do not seem to think too much of the parents, considering them naive or uneducated &#8212; irresponsible, perhaps, if they are poor and overwhelmed.\u00a0 Certainly they, the parents, know little about death.<\/p>\n<p>I know that cancer kids and their parents keep asking The Question in different ways, to be met by the Stone Wall.\u00a0 &#8220;We have exhausted all of our treatment options.\u00a0 We can do one more round of chemotherapy if that is what you want,\u00a0but we don\u2019t expect results.&#8221;\u00a0 Their best shot:\u00a0 &#8220;You should prepare yourselves . . .&#8221;<\/p>\n<p>I know that parents of children with cancer seem unwilling or unable to distinguish death by poisoning (chemotherapy) versus death by\u00a0the cancer itself.\u00a0 (Turning swollen and blue-green would seem to be a clue, or perhaps cardiac failure).\u00a0 Physicians deliberately blur the distinction.\u00a0 Certainly drug companies don\u2019t advertise the fact that cancer patients\u00a0die from\u00a0chemotherapy, like it\u2019s a big <a href=\"http:\/\/www.cancerbackup.org.uk\/Treatments\/Chemotherapy\/Individualdrugs\">secret<\/a>.<\/p>\n<p>Children in a Buddhist village in Thailand know more about death and dying than most Americans.\u00a0 The Thai do not pack their elderly off to hospitals and assisted living.\u00a0 Even royalty do not pack their dead into morgues or coolers.\u00a0\u00a0Family members sit with their loved ones as they die.\u00a0 The bodies are taken to the Buddhist temple for cremation.<\/p>\n<p>A man brought his elderly father to chat with the abbot of a temple in Northeast Thailand.\u00a0 &#8220;Get a doctor!&#8221; I wanted to scream as an old man ran through a litany of medical complaints.\u00a0\u00a0&#8220;That is how it is,&#8221;\u00a0the abbot responded calmly.\u00a0 &#8220;Life is suffering.&#8221;\u00a0 Together father and son made an offering, &#8220;making merit&#8221; (<em>tham bun<\/em>) for the next life.\u00a0 The monk chanted blessings.\u00a0 The pair went away, peaceful and accepting.<\/p>\n<p>Meditation is popular with laymen as well as monks in Thailand.\u00a0 Buddhist doctrine states that life is suffering and suffering is\u00a0caused by attachment, in particular,\u00a0attachment (grasping)\u00a0to the\u00a0illusion of permanence.\u00a0 Depending on the teacher\u2019s judgment,\u00a0meditation subjects\u00a0may include\u00a0a Buddha image (peaceful detachment, control of the mind and senses); a\u00a0lotus (beauty, impermanence); the\u00a0entire life cycle (birth, youth, sickness, old age, death); or, for the spiritually intrepid,\u00a0corpses.<\/p>\n<p>The American approach:\u00a0 &#8220;Listen to Dr. Oz.\u00a0 Eat salmon.\u00a0 We can delay aging.&#8221;<\/p>\n<p>In cultures less modern than ours, shamans or spiritual specialists usher the dying into the next life, offering knowledge and comfort to those who remain.\u00a0 The only equivalent in American culture, aside from rabbis and priests and ministers, is hospice care.\u00a0 I have yet to hear a Protestant minister elaborate on the death rattle, however, and hospice can be miserably difficult to access, even when the dying seems commonsense, obvious.<\/p>\n<p>I was with my\u00a0mother on her penultimate hospitalization for complications of arthritis-staph infection-heart attack.\u00a0 The doctor stonewalled when she demanded medicine to take the discomfort away.\u00a0 She was already on more than a dozen medications, interacting who knows how.\u00a0 The same when my brother panicked over her toe turning black.\u00a0 Yet even her\u00a0rheumatologist, a longtime friend,\u00a0would not sign off on hospice care.<\/p>\n<p>The staff at assisted living quit answering her call light.<\/p>\n<p>An ambulance was called for her final medical event.\u00a0 Ignoring the DNR, ER personnel treated her aggressively, seeking to avoid legal complication.\u00a0 Writhing in pain, fading in and out of consciousness &#8212; her nails gleaming with polish (a service of assisted living) &#8212; my mother&#8217;s\u00a0last night on earth was one of harsh lights, jarring noise and invasive medical procedures which hurt and humiliated her.<\/p>\n<p>She\u00a0slipped into a coma and died the next morning.<\/p>\n<p>Sherwin B. Nuland&#8217;s eloquent <em>How We Die: Life&#8217;s Final Chapter <\/em>(1994)\u00a0describes death\u00a0from\u00a0heart disease, cancer, accidents, etc.\u00a0 The book won a National Book Award,\u00a0yet otherwise savvy people in the medical field have not heard of it.\u00a0 A surgeon and teacher of medical history, Nuland regretfully recalls trying to &#8220;save&#8221; his brother from an incurable cancer, in a vain attempt to be a hero, subjecting him to futile treatments, marring his last days with\u00a0pain.<\/p>\n<p>I know from &#8220;Engage with Grace&#8221; on <em>e-patients.net<\/em> and <em>The Health Care Blog<\/em> that the holidays are a good time to have The Talk about preferred ways of dying.\u00a0 The Talk surely hastened my daughter\u2019s\u00a0return to college, yet now I know something new about her, and she about me.\u00a0 And I know that some god-awful percentage of health care costs in America is expended during the last few weeks of life.<\/p>\n<p>The medicalization of death has left Americans in denial, failing our loved ones as well as ourselves.<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>This is what I know about death. Admitted to a nursing home with a broken hip-dehydration, my ninety-eight-year-old grandmother awoke from a deep slumber, laughing and clapping her hands when [&hellip;]<\/p>\n","protected":false},"author":38,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"0","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[171],"tags":[9,7706,245],"coauthors":[8288],"class_list":["post-858","post","type-post","status-publish","format-standard","hentry","category-e-patient-stories","tag-cancer","tag-end-of-life","tag-engage-with-grace"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>How We Die - SPM Blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/participatorymedicine.org\/epatients\/2008\/12\/how-we-die.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"How We Die - SPM Blog\" \/>\n<meta property=\"og:description\" content=\"This is what I know about death. 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